UITNODIGING lifestyle · e m s-J o n g s m a L i f e s t y l e c h a n g e i n a d u l t s w i t h...

in adults intellectual disabilities

lifestylewith

Mariël Willems-Jongsma


Mariël Willems-J-J-JJongsma

Use and effectiveness of behaviour change techniques

Ma

riëlWillem

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Lifestylecha

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ina

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with

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UITNODIGING

Voor het bijwonen van de openbare verdediging

van het proefschrift

Lifestyle change in adults withintellectual disabilities

Use and effectiveness ofbehaviour change techniques

door


Op maandag 9 december 2019om 14.30 uur

in het academiegebouw vande Rijksuniversiteit Groningen,

Broerstraat 5 te Groningen

Paranimfen:

Gerjan Willems 0610394409Ilse Mol-Jongsma 0641422911


Goudsbloemstraat 508012XN Zwolle

[email protected]

Lifestyle change in adults with intellectual disabilities



138541-Willems_BNW.indd 1 31-10-19 10:07

The work presented in this thesis was performed at the Research Group Healthy Ageing, Allied Health Care and

Nursing, Hanze University of Applied Sciences, Groningen, the Netherlands, at the Research Institute SHARE of

the Groningen Graduate School of Medical Sciences of the University Medical Center Groningen, University of

Groningen, the Netherlands.

Printing Ridderprint BV, www.ridderprint.nl

ISBN 978-94-034-2140-7

ISBN 978-94-034-2139-1 (E-book)

© 2019 Mariël Willems-Jongsma

All rights reserved. No parts of this publication may be reproduced, stored in a retrieval system or transmitted in

any form or by any means, without the prior written permission of the copyright owner.


Use and effectiveness of BCTs

Proefschrift

ter verkrijging van de graad van doctor aan de Rijksuniversiteit Groningen

op gezag van de rector magnificus prof. dr. C. Wijmenga

en volgens besluit van het College voor Promoties.

De openbare verdediging zal plaatsvinden op

maandag 9 december 2019 om 14.30 uur

door

Mariël Jongsma

geboren op 19 januari 1991 te Almelo

138541-Willems_BNW.indd 2 31-10-19 10:07

The work presented in this thesis was performed at the Research Group Healthy Ageing, Allied Health Care and

Nursing, Hanze University of Applied Sciences, Groningen, the Netherlands, at the Research Institute SHARE of

the Groningen Graduate School of Medical Sciences of the University Medical Center Groningen, University of

Groningen, the Netherlands.

Printing Ridderprint BV, www.ridderprint.nl

ISBN 978-94-034-2140-7

ISBN 978-94-034-2139-1 (E-book)

© 2019 Mariël Willems-Jongsma

All rights reserved. No parts of this publication may be reproduced, stored in a retrieval system or transmitted in

any form or by any means, without the prior written permission of the copyright owner.


Use and effectiveness of BCTs

Proefschrift

ter verkrijging van de graad van doctor aan de Rijksuniversiteit Groningen

op gezag van de rector magnificus prof. dr. C. Wijmenga

en volgens besluit van het College voor Promoties.

De openbare verdediging zal plaatsvinden op

maandag 9 december 2019 om 14.30 uur

door

Mariël Jongsma

geboren op 19 januari 1991 te Almelo

138541-Willems_BNW.indd 3 31-10-19 10:07

Promotor Prof. dr. C.P. van der Schans

Copromotores

Dr. A. Waninge

Dr. J. de Jong

Dr. T.I.M. Hilgenkamp

Beoordelingscommissie

Prof. dr. M. Hagedoorn

Prof. dr. A.A.J. van der Putten

Prof. dr. G. Leusink

Contents

Chapter 1 General introduction 14

Chapter 2 Effects of lifestyle change interventions for people with intellectual 25

disabilities: Systematic review and meta-analysis of randomized

controlled trials

Journal of Applied Research in Intellectual Disabilities, 31(6), 949-961

Chapter 3 Use of behaviour change techniques in lifestyle change interventions 55

for people with intellectual disabilities: A systematic review

Research in Developmental Disabilities, 60, 256-268

Chapter 4 Exploration of suitable behaviour change techniques for lifestyle change in 95

individuals with mild intellectual disabilities: A Delphi study


Chapter 5 Behaviour change techniques used in lifestyle support of adults with mild 119

intellectual disabilities

Manuscript submitted

Chapter 6 Training professional caregivers in changing lifestyle behaviour of adults 135

with mild intellectual disabilities: a pilot-study


Chapter 7 General discussion 153

Nederlandse samenvatting 162

Dankwoord 168

Research Institute for Health Research SHARE 173

138541-Willems_BNW.indd 4 31-10-19 10:07

Promotor Prof. dr. C.P. van der Schans

Copromotores

Dr. A. Waninge

Dr. J. de Jong

Dr. T.I.M. Hilgenkamp

Beoordelingscommissie

Prof. dr. M. Hagedoorn

Prof. dr. A.A.J. van der Putten

Prof. dr. G. Leusink

Contents

Chapter 1 General introduction 14

Chapter 2 Effects of lifestyle change interventions for people with intellectual 25

disabilities: Systematic review and meta-analysis of randomized

controlled trials


Chapter 3 Use of behaviour change techniques in lifestyle change interventions 55

for people with intellectual disabilities: A systematic review

Research in Developmental Disabilities, 60, 256-268

Chapter 4 Exploration of suitable behaviour change techniques for lifestyle change in 95



Chapter 5 Behaviour change techniques used in lifestyle support of adults with mild 119



Chapter 6 Training professional caregivers in changing lifestyle behaviour of adults 135



Chapter 7 General discussion 153

Nederlandse samenvatting 162

Dankwoord 168

Research Institute for Health Research SHARE 173

138541-Willems_BNW.indd 5 31-10-19 10:07

Chapter 1

General introduction

138541-Willems_BNW.indd 6 31-10-19 10:07

Chapter 1

General introduction

138541-Willems_BNW.indd 7 31-10-19 10:07

1 | ADULTS WITH INTELLECTUAL DISABILITIES

An intellectual disability (ID) can be defined as a “disorder with onset during the developmental period that

includes both intellectual and adaptive functioning deficits in conceptual, social and practical domains”

(American Psychiatric Association, 2013, p. 33). Adults with ID experience: a) limitations in intellectual

functioning (for example: reasoning, problem solving, planning, abstract thinking), b) deficits in adaptive

functions and c) onset of deficits during the developmental period (American Psychiatric Association, 2013).

Specifically, adults with mild ID (IQ 50-69) need support with abstract thinking, executive functioning, academic

skills and additional support in daily living (American Psychiatric Association, 2013). According to the

International Statistical Classification of Diseases and Related Health Problems (ICD-10), it is important to notice

the emotional and social development because of its influence on daily functioning (Schalock et al., 2002; WHO,

1992).

2 | HEALTHY LIFESTYLE OF ADULTS WITH INTELLECTUAL DISABILITIES

In the Netherlands, 47.7% of the adults are overweight or obese (Gezondheidsraad, 2017). Only 44% of adults in

the Netherlands achieve the latest Dutch physical activity guidelines in 2017 (Gezondheidsraad, 2017). These

guidelines state that adults should include 150 minutes exercise of moderate to severe intensity on multiple days

per week. Additionally, bone and muscle strengthening exercises should be conducted and one should prevent

too much time sitting (Gezondheidsraad, 2017). Adults with ID experience much more health problems and

health inequalities in comparison to adults from the general population (Van Schrojenstein Lantman-De Valk &

Walsh, 2008). Specifically, with regard to physical activity and nutrition, they experience physical inactivity

(Hilgenkamp, Reis, Van Wijck & Evenhuis, 2012; Peterson, Janz & Lowe, 2008), have high levels of sedentary

behaviour (Melville et al., 2017) as well as unhealthy eating habits (Haveman et al., 2010; Hsieh, Rimmer, &

Heller, 2014). Also, their level of health needs are higher (Cooper & Bailey, 2001; Wilson & Haire, 1990) and these

needs are often unmet (Lennox & Kerr, 1997; Wilson & Haire, 1990).

Using the International Classification of Functioning, Disability and Health (ICF), health consists of five underlying

constructs, namely “functions,” “activities,” “participation,” “personal factors” and “environmental factors”

(World Health Organisation, 2001). Moreover, a healthy lifestyle is related to improved quality of life, more

participation in society (Heller, McCubbin, Drum, & Peterson, 2011) and more independency in activities of daily

living (Hilgenkamp, Van Wijck & Evenhuis, 2011; Van Schijndel-Speet, Evenhuis, Van Wijck & Echteld, 2014). It is

thus of main importance to improve the health of adults with ID from an individual as well as a societal

perspective.

3 | DUTCH ID CARE ORGANISATIONS AND LIFESTYLE CHANGE

To improve the lifestyle behaviour of their caretakers, a Dutch consort of 9 ID care organisations was formed, an

innovative collaboration for practice. These organisations (De Trans, De Zijlen, Stichting Sprank, ’s Heerenloo

Zorggroep, Talant, Cosis, Koninklijke Visio Noord Nederland, Philadelphia and Vanboeijen) aim to improve and

maintain a healthy lifestyle for their caretakers. They want to know if their current interventions and lifestyle

9

approaches are effective and how their employees can improve the lifestyle behaviour of their caretakers.

Together they formulated research questions and supported research to promote a healthy life for people with

intellectual disabilities. For all research performed within this consortium, the central theme is lifestyle change

of individuals with ID. This thesis is part of this research programme, which aims to target adults with ID as well

as their social and physical environment and ID care organisation policies.

4 | THEORETICAL FRAMEWORK OF THE THESIS

To improve the health of adults with ID, a socio-ecological model for health promotion (McLeroy, Bibeau,

Steckler, & Glanz, 1988) was used as a theoretical framework for this thesis. According to this model, the

intrapersonal and interpersonal level as well as organizational and community factors and public policy

influenced health behaviour, see Figure 1.

Figure 1: Socio ecological model for health promotion (McLeroy et al., 1988)

We focused on the interpersonal level, i.e. the use of behaviour change techniques (BCTs) which professional

caregivers can apply to support a healthy lifestyle in individuals with intellectual disabilities. BCTs have shown to

be effective components of interventions changing lifestyle behaviour in the general population (Bird et al. 2013,

Greaves et al., 2011; Olander et al., 2013). To identify effective components of interventions aiming to change

lifestyle behaviour, it is necessary to use a list of comprehensive techniques to change behaviour, for example

the CALO-RE taxonomy (Michie et al., 2011), which consists of 40 BCTs. Until now, it is unclear whether these

Public policy

Interpersonal

Organizational

Intrapersonal

Community

138541-Willems_BNW.indd 8 31-10-19 10:07

1 | ADULTS WITH INTELLECTUAL DISABILITIES

An intellectual disability (ID) can be defined as a “disorder with onset during the developmental period that

includes both intellectual and adaptive functioning deficits in conceptual, social and practical domains”

(American Psychiatric Association, 2013, p. 33). Adults with ID experience: a) limitations in intellectual

functioning (for example: reasoning, problem solving, planning, abstract thinking), b) deficits in adaptive

functions and c) onset of deficits during the developmental period (American Psychiatric Association, 2013).

Specifically, adults with mild ID (IQ 50-69) need support with abstract thinking, executive functioning, academic

skills and additional support in daily living (American Psychiatric Association, 2013). According to the

International Statistical Classification of Diseases and Related Health Problems (ICD-10), it is important to notice

the emotional and social development because of its influence on daily functioning (Schalock et al., 2002; WHO,

1992).

2 | HEALTHY LIFESTYLE OF ADULTS WITH INTELLECTUAL DISABILITIES

In the Netherlands, 47.7% of the adults are overweight or obese (Gezondheidsraad, 2017). Only 44% of adults in

the Netherlands achieve the latest Dutch physical activity guidelines in 2017 (Gezondheidsraad, 2017). These

guidelines state that adults should include 150 minutes exercise of moderate to severe intensity on multiple days

per week. Additionally, bone and muscle strengthening exercises should be conducted and one should prevent

too much time sitting (Gezondheidsraad, 2017). Adults with ID experience much more health problems and

health inequalities in comparison to adults from the general population (Van Schrojenstein Lantman-De Valk &

Walsh, 2008). Specifically, with regard to physical activity and nutrition, they experience physical inactivity

(Hilgenkamp, Reis, Van Wijck & Evenhuis, 2012; Peterson, Janz & Lowe, 2008), have high levels of sedentary

behaviour (Melville et al., 2017) as well as unhealthy eating habits (Haveman et al., 2010; Hsieh, Rimmer, &

Heller, 2014). Also, their level of health needs are higher (Cooper & Bailey, 2001; Wilson & Haire, 1990) and these

needs are often unmet (Lennox & Kerr, 1997; Wilson & Haire, 1990).

Using the International Classification of Functioning, Disability and Health (ICF), health consists of five underlying

constructs, namely “functions,” “activities,” “participation,” “personal factors” and “environmental factors”

(World Health Organisation, 2001). Moreover, a healthy lifestyle is related to improved quality of life, more

participation in society (Heller, McCubbin, Drum, & Peterson, 2011) and more independency in activities of daily

living (Hilgenkamp, Van Wijck & Evenhuis, 2011; Van Schijndel-Speet, Evenhuis, Van Wijck & Echteld, 2014). It is

thus of main importance to improve the health of adults with ID from an individual as well as a societal

perspective.

3 | DUTCH ID CARE ORGANISATIONS AND LIFESTYLE CHANGE

To improve the lifestyle behaviour of their caretakers, a Dutch consort of 9 ID care organisations was formed, an

innovative collaboration for practice. These organisations (De Trans, De Zijlen, Stichting Sprank, ’s Heerenloo

Zorggroep, Talant, Cosis, Koninklijke Visio Noord Nederland, Philadelphia and Vanboeijen) aim to improve and

maintain a healthy lifestyle for their caretakers. They want to know if their current interventions and lifestyle

9

approaches are effective and how their employees can improve the lifestyle behaviour of their caretakers.

Together they formulated research questions and supported research to promote a healthy life for people with

intellectual disabilities. For all research performed within this consortium, the central theme is lifestyle change

of individuals with ID. This thesis is part of this research programme, which aims to target adults with ID as well

as their social and physical environment and ID care organisation policies.

4 | THEORETICAL FRAMEWORK OF THE THESIS

To improve the health of adults with ID, a socio-ecological model for health promotion (McLeroy, Bibeau,

Steckler, & Glanz, 1988) was used as a theoretical framework for this thesis. According to this model, the

intrapersonal and interpersonal level as well as organizational and community factors and public policy

influenced health behaviour, see Figure 1.

Figure 1: Socio ecological model for health promotion (McLeroy et al., 1988)

We focused on the interpersonal level, i.e. the use of behaviour change techniques (BCTs) which professional

caregivers can apply to support a healthy lifestyle in individuals with intellectual disabilities. BCTs have shown to

be effective components of interventions changing lifestyle behaviour in the general population (Bird et al. 2013,

Greaves et al., 2011; Olander et al., 2013). To identify effective components of interventions aiming to change

lifestyle behaviour, it is necessary to use a list of comprehensive techniques to change behaviour, for example

the CALO-RE taxonomy (Michie et al., 2011), which consists of 40 BCTs. Until now, it is unclear whether these

Public policy

Interpersonal

Organizational

Intrapersonal

Community

138541-Willems_BNW.indd 9 31-10-19 10:07

10

effective components could be effective in interventions for people with ID as well (Van Schijndel-Speet, 2015).

In this thesis, we used the CALO-RE taxonomy to identify effective components of lifestyle change interventions

for people with ID. A short list of the BCTs is given below, see Figure 2, the entire taxonomy with definitions can

be found in the Appendix.

Figure 2: Overview of the CALO-RE taxonomy of behaviour change techniques

21) Provide instruction on how to perform the behaviour;

22) Model/Demonstrate the behaviour;

23) Teach to use prompts/cues;

24) Environmental restructuring;

25) Agree behavioural contract;

26) Prompt practice;

27) Use of follow-up prompts;

28) Facilitate social comparison;

29) Plan social support/social change;

30) Prompt identification as role model/position advocate;

31) Prompt anticipated regret;

32) Fear arousal;

33) Prompt self-talk;

34) Prompt use of imagery;

35) Relapse prevention/coping planning;

36) Stress management/emotional control training;

37) Motivational interviewing;

38) Time management;

39) General communication skills training;

40) Stimulate anticipation of future rewards

(Michie et al., 2011).

1) Provide information on consequences of behaviour in

general;

2) Provide information on consequences of behaviour to

the individual;

3) Provide information about others’ approval;

4) Provide normative information about others’

behaviour;

5) Goal setting (behaviour);

6) Goal setting (outcome);

7) Action planning;

8) Barrier identification/problem solving;

9) Set graded tasks;

10) Prompt review of behavioural goals;

11) Prompt review of outcome goals;

12) Prompt rewards contingent on effort or progress

towards behaviour;

13) Provide rewards contingent on successful behaviour;

14) Shaping;

15) Prompting generalisation of a target behaviour;

16) Prompt self-monitoring of behaviour;

17) Prompt self-monitoring of behavioural outcome;

18) Prompting focus on past success;

19) Provide feedback on performance;

20) Provide information on where and when to perform

the behaviour;

11

5 | LIFESTYLE CHANGE IN ADULTS WITH MILD INTELLECTUAL DISABILITIES

It is necessary to improve the lifestyle of adults with ID, to reduce health risks and health inequalities (Alesi &

Pepi, 2015). However, evidence for the effectiveness of lifestyle change interventions in adults with ID is limited

(Brooker et al., 2015; Scott & Havercamp, 2016; Spanos, Melville, & Hankey, 2013). Some studies found small

significant changes on health outcomes (Curtin et al., 2013, Marks, Sisirak, & Chang, 2013, Van Schijndel-Speet,

Evenhuis, Van Wijck, Montfort, & Echteld, 2017), whereas other studies lacked significant effects (Bergström,

Hagströmer, Hagberg, & Elinder, 2013, Melville et al., 2015, Shields & Taylor, 2015). Since health needs are

different in adults with different levels of ID (Kinnear et al., 2018), lifestyle change interventions need to be

tailored to level of ID. Until now, an overview of lifestyle change interventions and their effectiveness is missing,

as well as knowledge about effective behaviour change techniques for people with mild ID.

Also, the role of professional caregivers is of great importance in changing health behaviour of adults with ID

(Alesi & Pepi, 2015; Grondhuis & Aman, 2014; Heller et al., 2011; Melville, Hamilton, Hankey, Miller & Boyle,

2007; Naaldenberg, Kuijken, van Dooren & De Valk, 2013) and might be the key to a successful behavioural

intervention (Felce, Lowe, Beecham, & Hallam, 2000). However, until now, no knowledge is available if and how

BCT’s are used by caregivers in daily support of persons with mild ID. Also, it is important to improve training for

caregivers (Ptomey et al., 2018), as they have significant training needs promoting healthy behaviour (Melville

et al., 2009). Which specific wishes and needs they have, is still unclear.

So far, training and development focussed on knowledge and competences was still ineffective (O’Connor-

Fleming, Parker, Higgins, & Gould, 2006). If professional caregivers would be able support adults with mild ID

effectively to change their lifestyle behaviour, adults with mild ID may live healthier, longer and experience a

higher quality of life. Therefore, the main aim of this thesis is to investigate the usage and effectiveness of lifestyle

change interventions by professional caregivers to support adults with ID.

6 | CONTENT OF THE THESIS

The first question of this thesis is whether there are already effective lifestyle change interventions for adults

with ID, which will be answered in Chapter 2. The International Classification of Functioning, Disability and Health

(ICF) (World Health Organisation, 2001) will be introduced to categorize the outcome measures in underlying

constructs, including “functions,” “activities,” “participation,” “personal factors” and “environmental factors”.

Afterwards, the main aim of Chapter 3 is to provide an overview of current lifestyle change interventions for

people with ID. It aims to introduce the identification of BCTs in lifestyle change interventions and determines

the quality of studies investigating lifestyle change interventions. The question whether BCTs are suitable for use

in lifestyle change in people with mild ID will be answered in Chapter 4, whereas the main aim of Chapter 5 is to

investigate the use of BCTs by professional caregivers in daily support of people with mild ID. Also, this chapter

aims to provide a comparison between the suitable BCTs and the BCTs used in daily support. The results of an

intervention to train professional caregivers in one of the most suitable BCTs, called “Action planning”, will be

138541-Willems_BNW.indd 10 31-10-19 10:07

10

effective components could be effective in interventions for people with ID as well (Van Schijndel-Speet, 2015).

In this thesis, we used the CALO-RE taxonomy to identify effective components of lifestyle change interventions

for people with ID. A short list of the BCTs is given below, see Figure 2, the entire taxonomy with definitions can

be found in the Appendix.

Figure 2: Overview of the CALO-RE taxonomy of behaviour change techniques

21) Provide instruction on how to perform the behaviour;

22) Model/Demonstrate the behaviour;

23) Teach to use prompts/cues;

24) Environmental restructuring;

25) Agree behavioural contract;

26) Prompt practice;

27) Use of follow-up prompts;

28) Facilitate social comparison;

29) Plan social support/social change;

30) Prompt identification as role model/position advocate;

31) Prompt anticipated regret;

32) Fear arousal;

33) Prompt self-talk;

34) Prompt use of imagery;

35) Relapse prevention/coping planning;

36) Stress management/emotional control training;

37) Motivational interviewing;

38) Time management;

39) General communication skills training;

40) Stimulate anticipation of future rewards

(Michie et al., 2011).

1) Provide information on consequences of behaviour in

general;

2) Provide information on consequences of behaviour to

the individual;

3) Provide information about others’ approval;

4) Provide normative information about others’

behaviour;

5) Goal setting (behaviour);

6) Goal setting (outcome);

7) Action planning;

8) Barrier identification/problem solving;

9) Set graded tasks;

10) Prompt review of behavioural goals;

11) Prompt review of outcome goals;

12) Prompt rewards contingent on effort or progress

towards behaviour;

13) Provide rewards contingent on successful behaviour;

14) Shaping;

15) Prompting generalisation of a target behaviour;

16) Prompt self-monitoring of behaviour;

17) Prompt self-monitoring of behavioural outcome;

18) Prompting focus on past success;

19) Provide feedback on performance;

20) Provide information on where and when to perform

the behaviour;

11

5 | LIFESTYLE CHANGE IN ADULTS WITH MILD INTELLECTUAL DISABILITIES

It is necessary to improve the lifestyle of adults with ID, to reduce health risks and health inequalities (Alesi &

Pepi, 2015). However, evidence for the effectiveness of lifestyle change interventions in adults with ID is limited

(Brooker et al., 2015; Scott & Havercamp, 2016; Spanos, Melville, & Hankey, 2013). Some studies found small

significant changes on health outcomes (Curtin et al., 2013, Marks, Sisirak, & Chang, 2013, Van Schijndel-Speet,

Evenhuis, Van Wijck, Montfort, & Echteld, 2017), whereas other studies lacked significant effects (Bergström,

Hagströmer, Hagberg, & Elinder, 2013, Melville et al., 2015, Shields & Taylor, 2015). Since health needs are

different in adults with different levels of ID (Kinnear et al., 2018), lifestyle change interventions need to be

tailored to level of ID. Until now, an overview of lifestyle change interventions and their effectiveness is missing,

as well as knowledge about effective behaviour change techniques for people with mild ID.

Also, the role of professional caregivers is of great importance in changing health behaviour of adults with ID

(Alesi & Pepi, 2015; Grondhuis & Aman, 2014; Heller et al., 2011; Melville, Hamilton, Hankey, Miller & Boyle,

2007; Naaldenberg, Kuijken, van Dooren & De Valk, 2013) and might be the key to a successful behavioural

intervention (Felce, Lowe, Beecham, & Hallam, 2000). However, until now, no knowledge is available if and how

BCT’s are used by caregivers in daily support of persons with mild ID. Also, it is important to improve training for

caregivers (Ptomey et al., 2018), as they have significant training needs promoting healthy behaviour (Melville

et al., 2009). Which specific wishes and needs they have, is still unclear.

So far, training and development focussed on knowledge and competences was still ineffective (O’Connor-

Fleming, Parker, Higgins, & Gould, 2006). If professional caregivers would be able support adults with mild ID

effectively to change their lifestyle behaviour, adults with mild ID may live healthier, longer and experience a

higher quality of life. Therefore, the main aim of this thesis is to investigate the usage and effectiveness of lifestyle

change interventions by professional caregivers to support adults with ID.

6 | CONTENT OF THE THESIS

The first question of this thesis is whether there are already effective lifestyle change interventions for adults

with ID, which will be answered in Chapter 2. The International Classification of Functioning, Disability and Health

(ICF) (World Health Organisation, 2001) will be introduced to categorize the outcome measures in underlying

constructs, including “functions,” “activities,” “participation,” “personal factors” and “environmental factors”.

Afterwards, the main aim of Chapter 3 is to provide an overview of current lifestyle change interventions for

people with ID. It aims to introduce the identification of BCTs in lifestyle change interventions and determines

the quality of studies investigating lifestyle change interventions. The question whether BCTs are suitable for use

in lifestyle change in people with mild ID will be answered in Chapter 4, whereas the main aim of Chapter 5 is to

investigate the use of BCTs by professional caregivers in daily support of people with mild ID. Also, this chapter

aims to provide a comparison between the suitable BCTs and the BCTs used in daily support. The results of an

intervention to train professional caregivers in one of the most suitable BCTs, called “Action planning”, will be

138541-Willems_BNW.indd 11 31-10-19 10:07

12

described in Chapter 6. The main findings of this thesis and implications for clinical practice and future research

will be discussed in Chapter 7.

13

REFERENCES

Alesi, M., & Pepi, A. (2015). Physical activity engagement in young people with Down syndrome:

Investigating Parental Beliefs. Journal of Applied Research in Intellectual Disabilities, 28(2), 61-80.

American Psychiatric Association (2013). The diagnostic and statistical manual of mental disorders: DSM-5

(5th Ed.). Washington, DC: Author.

Bergström, H., Hagströmer, M., Hagberg, J., & Elinder, L. S. (2013). A multi-component universal intervention to

improve diet and physical activity among adults with intellectual disabilities in community residences:

a cluster randomised controlled trial. Research in Developmental Disabilities, 34(11), 3847-3857.

Bird, E. L., Baker, G., Mutrie, N., Ogilvie, D., Sahlqvist, S., & Powell, J. (2013). Behavior change techniques used to

promote walking and cycling: A systematic review. Health psychology, 32(8), 829.

Brooker, K., Van Dooren, K., McPherson, L., Lennox, N., & Ware, R. (2015). Systematic review of interventions

aiming to improve involvement in physical activity among adults with intellectual disability. Journal of

Physical Activity and Health, 12(3), 434-444.

Cooper, S. A., & Bailey, N. M. (2001). Psychiatric disorders amongst adults with learning disabilities

prevalence and relationship to ability level. Irish Journal of Psychological Medicine, 18(2), 45-53.

Curtin, C., Bandini, L. G., Must, A., Gleason, J., Lividini, K., Phillips, S., Eliasziw, M., Maslin, M., & Fleming, R. K.

(2013). Parent support improves weight loss in adolescents and young adults with Down syndrome. The

Journal of Pediatrics, 163(5), 1402-1408.

Felce, D., Lowe, K., Beecham, J., & Hallam A. (2000). Exploring the relationships between costs and quality of

services for adults with severe intellectual disabilities and the most sever challenging behaviours in

Wales: A multivariate regression analysis. Journal of Intellectual & Developmental Disability, 25(4), 307-

26.

Gezondheidsraad (2017). Beweegrichtlijnen 2017 [physical activity guidelines 2017]. The Hague, the

Netherlands: Gezondheidsraad. Retrieved from

https://www.gezondheidsraad.nl/organisatie/leefstijl/documenten/adviezen/2017/08/22/

beweegrichtlijnen-2017

Greaves, C. J., Sheppard, K. E., Abraham, C., Hardeman, W., Roden, M., Evans, P. H., & Schwarz, P.

(2011). Systematic review of reviews of intervention components associated with increased

effectiveness in dietary and physical activity interventions. BMC public health, 11(1), 119.

Grondhuis, S. N., & Aman, M. G. (2014). Overweight and obesity in youth with developmental disabilities: a

call to action. Journal of Intellectual Disability Research, 58(9), 787-799.

138541-Willems_BNW.indd 12 31-10-19 10:07

12

described in Chapter 6. The main findings of this thesis and implications for clinical practice and future research

will be discussed in Chapter 7.

13

REFERENCES

Alesi, M., & Pepi, A. (2015). Physical activity engagement in young people with Down syndrome:


American Psychiatric Association (2013). The diagnostic and statistical manual of mental disorders: DSM-5

(5th Ed.). Washington, DC: Author.

Bergström, H., Hagströmer, M., Hagberg, J., & Elinder, L. S. (2013). A multi-component universal intervention to

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Haveman, M., Heller, T., Lee, L., Maaskant, M., Shooshtari, S., & Strydom, A. (2010). Major health risks in aging

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Hilgenkamp, T. I., Van Wijck, R., & Evenhuis, H. M. (2011). (Instrumental) activities of daily living in older adults

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Hsieh, K., Rimmer, J. H., & Heller, T. (2014). Obesity and associated factors in adults with intellectual

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Marks, B., Sisirak, J., & Chang, Y. C. (2013). Efficacy of the HealthMatters Program Train‐the Trainer Model.

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Melville, C. A., Mitchell, F., Stalker, K., Matthews, L., McConnachie, A., Murray, H. M., Melling, C., & Mutrie, N.

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Melville, C. A., Oppewal, A., Elinder, L. S., Freiberger, E., Guerra-Balic, M., Hilgenkamp, T. I. M., (…) & Giné-

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intellectual disabilities—A systematic review. Preventive Medicine, 97, 62-71.

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10(29), 1-15.

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Disabilities: Report of an International Panel of Experts. Mental Retardation 40(6):457-470.

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syndrome: A phase II randomised controlled trial. Journal of Intellectual and Developmental Disability,

40(2), 115-125.

Snell, M. E., Luckasson, R., Borthwick-Duffy, W. S., Bradley, V., Buntinx, W. H., Coulter, D. L., (...) &

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138541-Willems_BNW.indd 14 31-10-19 10:07

14










with intellectual disabilities. Research in Developmental Disabilities, 32(5), 1977-1987.



Kinnear, D., Morrison, J., Allan, L., Henderson, A., Smiley, E., & Cooper, S. A. (2018). Prevalence of

physical conditions and multimorbidity in a cohort of adults with intellectual disabilities with and

without Down syndrome: cross-sectional study. BMJ open, 8(2), e018292.

Lennox, N. G., & Kerr, M. P. (1997). Primary health care and people with an intellectual disability: the

evidence base. Journal of Intellectual Disability Research, 41(5), 365-372.

Marks, B., Sisirak, J., & Chang, Y. C. (2013). Efficacy of the HealthMatters Program Train‐the Trainer Model.

Journal of Applied Research in Intellectual Disabilities, 26(4), 319-334.








Melville, C. A., Mitchell, F., Stalker, K., Matthews, L., McConnachie, A., Murray, H. M., Melling, C., & Mutrie, N.

(2015). Effectiveness of a walking programme to support adults with intellectual disabilities to increase

physical activity: walk well cluster-randomised controlled trial. International Journal of Behavioral


Melville, C. A., Oppewal, A., Elinder, L. S., Freiberger, E., Guerra-Balic, M., Hilgenkamp, T. I. M., (…) & Giné-

Garriga, M. (2017). Definitions, measurement and prevalence of sedentary behaviour in adults with

intellectual disabilities—A systematic review. Preventive Medicine, 97, 62-71.

15








promotion programs. Health Promotion Journal of Australia: Official Journal of Australian Association of

Health Promotion Professionals, 17(1), 61–66.




10(29), 1-15.



Ptomey, L. T., Saunders, R. R., Saunders, M., Washburn, R. A., Mayo, M. S., Sullivan, D. K., (…) & Donnelly, J. E.



31(Suppl. 1), 82-96.

Ras, M., Verbeek-Oudijk, D., & Eggink, E. (2013). Lasten onder de loep. De kostengroei van de zorg voor

verstandelijk gehandicapten ontrafeld [Charges Unravelled: The Cost Growth of the Care for People with

an Intellectual Disability]. The Hague, The Netherlands: Sociaal en Cultureel Planbureau.

Scott, H. M., & Havercamp, S. M. (2016). Systematic Review of Health Promotion Programs Focused on Behavioral

Changes for People With Intellectual Disability. Intellectual and developmental disabilities, 54(1), 63-76.



Disabilities: Report of an International Panel of Experts. Mental Retardation 40(6):457-470.

Shields, N., & Taylor, N. F. (2015). The feasibility of a physical activity program for young adults with Down


40(2), 115-125.

Snell, M. E., Luckasson, R., Borthwick-Duffy, W. S., Bradley, V., Buntinx, W. H., Coulter, D. L., (...) &

Yeager, M. H. (2009). Characteristics and needs of people with intellectual disability who have higher

IQs. Intellectual and Developmental Disabilities, 47(3), 220-233.

138541-Willems_BNW.indd 15 31-10-19 10:07

16

Soresi, S., Nota, L., & Wehmeyer, M. L. (2011). Community involvement in promoting inclusion, participation

and self‐determination. International Journal of Inclusive Education, 15(1), 15- 28.

Spanos, D., Melville, C. A., & Hankey, C. R. (2013). Weight management interventions in adults with

intellectual disabilities and obesity: a systematic review of the evidence. Nutrition Journal, 12, 1-16.

Spanos, D., Hankey, C. R., Boyle, S., Koshy, P., Macmillan, S., Matthews, L., (…) Melville, C. A. (2013). Carers’

perspectives of a weight loss intervention for adults with intellectual disabilities and obesity: A

qualitative study. Journal of Intellectual Disability Research, 57(1), 90–102.

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based physical activity programme for ageing adults with ID: a process evaluation. Journal of Evaluation

in Clinical Practice, 20(4), 401-407.

Van Schijndel‐Speet, M., Evenhuis, H. M., van Wijck, R., van Montfort, K. C. A. G. M., & Echteld, M. A.

(2017). A structured physical activity and fitness programme for older adults with intellectual

disabilities: results of a cluster‐randomised clinical trial. Journal of Intellectual Disability

Research, 61(1), 16-29.

Van Schrojenstein Lantman-De Valk, H. M. J., & Walsh, P. N. (2008). Managing health problems in people with

intellectual disabilities. British Medical Journal: BMJ, 8(1), A2507.

Wilson, D. N., & Haire, A. (1990). Health care screening for people with mental handicap living in the

community. BMJ, 301(6765), 1379-1381.

Woittiez, I., Eggink, E., Putman, L., & Ras, M. (2018). An international comparison of care for people with

intellectual disabilities: an exploration. The Hague, the Netherlands: The Netherlands Institute for

Social Research.

Woittiez, I., Putman, L., Eggink E., & Ras, M. (2014). Zorg beter begrepen. Verklaringen voor de groeiende

vraag naar zorg voor mensen met een verstandelijke beperking. [Care Better Understood: Explanations

for the Growing Demand to Care for People with an Intellectual Disability]. The Hague, The Netherlands:

Sociaal en Cultureel Planbureau.

World Health Organization (WHO) (2001). International classification of functioning, disability and health: ICF.

Geneva, Switzerland: World Health Organisation.

17

APPENDIX | CALO-RE Taxonomy (Michie et al., 2011)

1. Provide information on consequences of behaviour in general

Information about the relationship between the behaviour and its possible or likely consequences in the general case, usually

based on epidemiological data, and not personalised for the individual (contrast with technique 2).

2. Provide information on consequences of behaviour to the individual

Information about the benefits and costs of action or inaction to the individual or tailored to a relevant group based on that

individual’s characteristics (i.e. demographics, clinical, behavioural or psychological information). This can include any

costs/benefits and not necessarily those related to health, e.g. feelings.

3. Provide information about others’ approval

Involves information about what other people think about the target person’s behaviour. It clarifies whether others will like,

approve or disapprove of what the person is doing or will do.

NB: Check that any instance does not also involve techniques 1 (Provide information on consequences of behaviour in

general) or 2 (Provide information on consequences of behaviour to the individual) or 4 (Provide normative information about

others’ behaviour).

4. Provide normative information about others’ behaviour

Involves providing information about what other people are doing i.e. indicates that a particular behaviour or sequence of

behaviours is common or uncommon amongst the population or amongst a specified group – presentation of case studies of

a few others is not normative information.

NB: this concerns other people’s actions and is distinct from the provision of information about others’ approval (technique

3 (Provide information about others’ approval)).

5. Goal setting (behaviour)

The person is encouraged to make a behavioural resolution (e.g. take more exercise next week). This is directed towards

encouraging people to decide to change or maintain change.

NB: This is distinguished from technique 6 (goal setting – outcome) and 7 (action planning) as it does not involve planning

exactly how the behaviour will be done and either when or where the behaviour or action sequence will be performed. Where

the text only states that goal setting was used without specifying the detail of action planning involved then this would be an

example of this technique (not technique 7 (action planning)). If the text states that ‘goal setting’ was used if it is not clear

from the report, if the goal setting was related to behaviour or to other outcomes, technique 6 should be coded. This includes

sub-goals or preparatory behaviours and/or specific contexts in which the behaviour will be performed. The behaviour in this

technique will be directly related to or be a necessary condition for the target behaviour (e.g. shopping for healthy eating;

buying equipment for physical activity).

NB: check if techniques applied to preparatory behaviours should also be coded as instances of technique 9 (Set graded tasks).

6. Goal setting (outcome)

The person is encouraged to set a general goal that can be achieved by behavioural means but is not defined in terms of

behaviour (e.g. to reduce blood pressure or lose/maintain weight), as opposed to a goal based on changing behaviour as

such. The goal may be an expected consequence of one or more behaviours, but is not a behaviour per se (see also techniques

5 (Goal setting – behaviour) and 7 (Action planning)). This technique may co-occur with technique 5 if goals for both behaviour

and other outcomes are set.

7. Action planning

Involves detailed planning of what the person will do including, as a minimum, when, in which situation and/or where to act.

‘When’ may describe frequency (such as how many times a day/week or duration (e.g. for how long). The exact content of

138541-Willems_BNW.indd 16 31-10-19 10:07

16

Soresi, S., Nota, L., & Wehmeyer, M. L. (2011). Community involvement in promoting inclusion, participation

and self‐determination. International Journal of Inclusive Education, 15(1), 15- 28.

Spanos, D., Melville, C. A., & Hankey, C. R. (2013). Weight management interventions in adults with

intellectual disabilities and obesity: a systematic review of the evidence. Nutrition Journal, 12, 1-16.

Spanos, D., Hankey, C. R., Boyle, S., Koshy, P., Macmillan, S., Matthews, L., (…) Melville, C. A. (2013). Carers’



United Nations (2006). Convention on the rights of persons with disabilities. Retrieved from

http://www.un.org/disabilities/documents/convention/convoptprot-e.pdf.







Van Schijndel‐Speet, M., Evenhuis, H. M., van Wijck, R., van Montfort, K. C. A. G. M., & Echteld, M. A.

(2017). A structured physical activity and fitness programme for older adults with intellectual

disabilities: results of a cluster‐randomised clinical trial. Journal of Intellectual Disability

Research, 61(1), 16-29.



Wilson, D. N., & Haire, A. (1990). Health care screening for people with mental handicap living in the

community. BMJ, 301(6765), 1379-1381.

Woittiez, I., Eggink, E., Putman, L., & Ras, M. (2018). An international comparison of care for people with

intellectual disabilities: an exploration. The Hague, the Netherlands: The Netherlands Institute for

Social Research.

Woittiez, I., Putman, L., Eggink E., & Ras, M. (2014). Zorg beter begrepen. Verklaringen voor de groeiende

vraag naar zorg voor mensen met een verstandelijke beperking. [Care Better Understood: Explanations

for the Growing Demand to Care for People with an Intellectual Disability]. The Hague, The Netherlands:

Sociaal en Cultureel Planbureau.



17

APPENDIX | CALO-RE Taxonomy (Michie et al., 2011)

1. Provide information on consequences of behaviour in general

Information about the relationship between the behaviour and its possible or likely consequences in the general case, usually

based on epidemiological data, and not personalised for the individual (contrast with technique 2).

2. Provide information on consequences of behaviour to the individual

Information about the benefits and costs of action or inaction to the individual or tailored to a relevant group based on that

individual’s characteristics (i.e. demographics, clinical, behavioural or psychological information). This can include any

costs/benefits and not necessarily those related to health, e.g. feelings.

3. Provide information about others’ approval

Involves information about what other people think about the target person’s behaviour. It clarifies whether others will like,

approve or disapprove of what the person is doing or will do.

NB: Check that any instance does not also involve techniques 1 (Provide information on consequences of behaviour in

general) or 2 (Provide information on consequences of behaviour to the individual) or 4 (Provide normative information about

others’ behaviour).

4. Provide normative information about others’ behaviour

Involves providing information about what other people are doing i.e. indicates that a particular behaviour or sequence of

behaviours is common or uncommon amongst the population or amongst a specified group – presentation of case studies of

a few others is not normative information.

NB: this concerns other people’s actions and is distinct from the provision of information about others’ approval (technique

3 (Provide information about others’ approval)).

5. Goal setting (behaviour)

The person is encouraged to make a behavioural resolution (e.g. take more exercise next week). This is directed towards

encouraging people to decide to change or maintain change.

NB: This is distinguished from technique 6 (goal setting – outcome) and 7 (action planning) as it does not involve planning

exactly how the behaviour will be done and either when or where the behaviour or action sequence will be performed. Where

the text only states that goal setting was used without specifying the detail of action planning involved then this would be an

example of this technique (not technique 7 (action planning)). If the text states that ‘goal setting’ was used if it is not clear

from the report, if the goal setting was related to behaviour or to other outcomes, technique 6 should be coded. This includes

sub-goals or preparatory behaviours and/or specific contexts in which the behaviour will be performed. The behaviour in this

technique will be directly related to or be a necessary condition for the target behaviour (e.g. shopping for healthy eating;

buying equipment for physical activity).

NB: check if techniques applied to preparatory behaviours should also be coded as instances of technique 9 (Set graded tasks).

6. Goal setting (outcome)

The person is encouraged to set a general goal that can be achieved by behavioural means but is not defined in terms of

behaviour (e.g. to reduce blood pressure or lose/maintain weight), as opposed to a goal based on changing behaviour as

such. The goal may be an expected consequence of one or more behaviours, but is not a behaviour per se (see also techniques

5 (Goal setting – behaviour) and 7 (Action planning)). This technique may co-occur with technique 5 if goals for both behaviour

and other outcomes are set.

7. Action planning

Involves detailed planning of what the person will do including, as a minimum, when, in which situation and/or where to act.

‘When’ may describe frequency (such as how many times a day/week or duration (e.g. for how long). The exact content of

138541-Willems_BNW.indd 17 31-10-19 10:07

18

action plans may or may not be described, in this case code as this technique if it is stated that the behaviour is planned

contingent to a specific situation or set of situations even if exact details are not present.

NB: The terms ‘goal setting’ or ‘action plan’ are not enough to ensure inclusion of this technique unless it is clear that plans

involve linking behavioural responses to specific situational cues, when only described as ‘goal setting’ or ‘action plan’ without

the above detail it should be regarded as applications of techniques 5 and 6.

8. Barrier identification/problem solving

This presumes having formed an initial plan to change behaviour. The person is prompted to think about potential barriers

and identify the ways of overcoming them. Barriers may include competing goals in specified situations. This may be described

as ‘problem solving’. If it is problem solving in relation to the performance of a behaviour, then it counts as an instance of this

technique. Examples of barriers may include behavioural, cognitive, emotional, environmental, social and/or physical

barriers.

NB: Closely related to techniques 7 (action planning) and 9 (set graded task), but involves a focus on specific obstacles to

performance. It contrasts with technique 35 (relapse prevention/coping planning), which is about maintaining behaviour that

has already been changed.

9. Set graded tasks

Breaking down the target behaviour into smaller easier to achieve tasks and enabling the person to build on small successes

to achieve target behaviour. This may include increments towards target behaviour or incremental increases from baseline

behaviour.

NB: The key difference to technique 7 (Action planning) lies in planning to perform a sequence of preparatory actions (e.g.

remembering to take gym kit to work), task components or target behaviours which are in a logical sequence or increase in

difficulty over time – as opposed to planning ‘if-then’ contingencies when/where to perform behaviours. General references

to increasing physical activity as intervention goal are not instances of this technique.

10. Prompt review of behavioural goals

Involves a review or analysis of the extent to which previously set behavioural goals (e.g. take more exercise next week) were

achieved. In most cases, this will follow previous goal setting (see technique 5, ‘goal setting-behaviour’) and an attempt to

act on those goals, followed by a revision or readjustment of goals, and/or means to attain them.

NB: Check if any instance also involves techniques 6 (goal setting – behaviour), 8 (barrier identification/problem solving), 9

(set graded tasks) or 11 (prompt review of outcome goals).

11. Prompt review of outcome goals

Involves a review or analysis of the extent to which previously set outcome goals (e.g. to reduce blood pressure or

lose/maintain weight) were achieved. In most cases, this will follow previous goal setting (see technique 6, goal setting-

outcome’) and an attempt to act on those goals, followed by a revision of goals, and/or means to attain them. NB: Check that

any instance does not also involve techniques 5 (goal setting – outcome), 8 (barrier identification/problem solving), 9 (set

graded tasks) or 10 (prompt review of behavioural goals).

12. Prompt rewards contingent on effort or progress towards behaviour

Involves the person using praise or rewards for attempts at achieving a behavioural goal. This might include efforts made

towards achieving the behaviour or progress made in preparatory steps towards the behaviour, but not merely participation

in intervention. This can include self-reward.

NB: This technique is not reinforcement for performing the target behaviour itself, which is an instance of technique 13

(provide rewards contingent on successful behaviour).

13. Provide rewards contingent on successful behaviour

19

Reinforcing successful performance of the specific target behaviour. This can include praise and encouragement as well as

material rewards but the reward/incentive must be explicitly linked to the achievement of the specific target behaviour i.e.

the person receives the reward if they perform the specified behaviour but not if they do not perform the behaviour. This

can include self-reward. Provisions of rewards for completing intervention components or materials are not instances of this

technique. References to provision of incentives for being more physically active are not instances of this technique unless

information about contingency to the performance of the target behaviour is provided. NB: Check the distinction between

this and techniques 7 (action planning) and 17 (prompt self-monitoring of behavioural outcome) and 19 (provide feedback

on performance).

14. Shaping

Contingent rewards are first provided for any approximation to the target behaviour e.g. for any increase in physical activity.

Then, later, only a more demanding performance, e.g. brisk walking for 10 min on 3 days a week would be rewarded. Thus,

this is graded use of contingent rewards over time.

15. Prompting generalisation of a target behaviour

Once behaviour is performed in a particular situation, the person is encouraged or helped to try it in another situation. The

idea is to ensure that the behaviour is not tied to one situation but becomes a more integrated part of the person’s life that

can be performed at a variety of different times and in a variety of contexts.

16. Prompt self-monitoring of behaviour

The person is asked to keep a record of specified behaviour(s) as a method for changing behaviour. This should be an explicitly

stated intervention component, as opposed to occurring as part of completing measures for research purposes. This could

e.g. take the form of a diary or completing a questionnaire about their behaviour, in terms of type, frequency, duration and/or

intensity. Check the distinction between this and techniques 17 (prompt self-monitoring of behavioural outcome).

17. Prompt self-monitoring of behavioural outcome

The person is asked to keep a record of specified measures expected to be influenced by the behaviour change, e.g. blood

pressure, blood glucose, weight loss, physical fitness. NB: It must be reported as part of the intervention, rather than only as

an outcome measure. Check the distinction between this and techniques 16 (Prompt self-monitoring of behaviour).

18. Prompting focus on past success

Involves instructing the person to think about or list previous successes in performing the behaviour (or parts of it). NB: This

is not just encouragement but a clear focus on the person’s past behaviour. It is also not feedback because it refers to

behaviour preceded the intervention.

19. Provide feedback on performance

This involves providing the participant with data about their own recorded behaviour (e.g. following technique 16 (prompt

self-monitoring of behaviour)) or commenting on a person’s behavioural performance (e.g. identifying a discrepancy with

between behavioural performance and a set goal – see techniques 5 (Goal setting – behaviour) and 7 (action planning) – or a

discrepancy between one’s own performance in relation to others’ – note this could also involve technique 28 (Facilitate

social comparison).

20. Provide information on where and when to perform the behaviour

Involves telling the person about when and where they might be able to perform the behaviour this e.g. tips on places and

times participants can access local exercise classes. This can be in either verbal or written form. NB: Check whether there are

also instances of technique 21 (Provide instruction on how to perform the behaviour).

21. Provide instruction on how to perform the behaviour

Involves telling the person how to perform behaviour or preparatory behaviours, either verbally or in written form. Examples

of instructions include; how to use gym equipment (without getting on and showing the participant), instruction on suitable

138541-Willems_BNW.indd 18 31-10-19 10:07

18

action plans may or may not be described, in this case code as this technique if it is stated that the behaviour is planned

contingent to a specific situation or set of situations even if exact details are not present.

NB: The terms ‘goal setting’ or ‘action plan’ are not enough to ensure inclusion of this technique unless it is clear that plans

involve linking behavioural responses to specific situational cues, when only described as ‘goal setting’ or ‘action plan’ without

the above detail it should be regarded as applications of techniques 5 and 6.

8. Barrier identification/problem solving

This presumes having formed an initial plan to change behaviour. The person is prompted to think about potential barriers

and identify the ways of overcoming them. Barriers may include competing goals in specified situations. This may be described

as ‘problem solving’. If it is problem solving in relation to the performance of a behaviour, then it counts as an instance of this

technique. Examples of barriers may include behavioural, cognitive, emotional, environmental, social and/or physical

barriers.

NB: Closely related to techniques 7 (action planning) and 9 (set graded task), but involves a focus on specific obstacles to

performance. It contrasts with technique 35 (relapse prevention/coping planning), which is about maintaining behaviour that

has already been changed.

9. Set graded tasks

Breaking down the target behaviour into smaller easier to achieve tasks and enabling the person to build on small successes

to achieve target behaviour. This may include increments towards target behaviour or incremental increases from baseline

behaviour.

NB: The key difference to technique 7 (Action planning) lies in planning to perform a sequence of preparatory actions (e.g.

remembering to take gym kit to work), task components or target behaviours which are in a logical sequence or increase in

difficulty over time – as opposed to planning ‘if-then’ contingencies when/where to perform behaviours. General references

to increasing physical activity as intervention goal are not instances of this technique.

10. Prompt review of behavioural goals

Involves a review or analysis of the extent to which previously set behavioural goals (e.g. take more exercise next week) were

achieved. In most cases, this will follow previous goal setting (see technique 5, ‘goal setting-behaviour’) and an attempt to

act on those goals, followed by a revision or readjustment of goals, and/or means to attain them.

NB: Check if any instance also involves techniques 6 (goal setting – behaviour), 8 (barrier identification/problem solving), 9

(set graded tasks) or 11 (prompt review of outcome goals).

11. Prompt review of outcome goals

Involves a review or analysis of the extent to which previously set outcome goals (e.g. to reduce blood pressure or

lose/maintain weight) were achieved. In most cases, this will follow previous goal setting (see technique 6, goal setting-

outcome’) and an attempt to act on those goals, followed by a revision of goals, and/or means to attain them. NB: Check that

any instance does not also involve techniques 5 (goal setting – outcome), 8 (barrier identification/problem solving), 9 (set

graded tasks) or 10 (prompt review of behavioural goals).

12. Prompt rewards contingent on effort or progress towards behaviour

Involves the person using praise or rewards for attempts at achieving a behavioural goal. This might include efforts made

towards achieving the behaviour or progress made in preparatory steps towards the behaviour, but not merely participation

in intervention. This can include self-reward.

NB: This technique is not reinforcement for performing the target behaviour itself, which is an instance of technique 13

(provide rewards contingent on successful behaviour).

13. Provide rewards contingent on successful behaviour

19

Reinforcing successful performance of the specific target behaviour. This can include praise and encouragement as well as

material rewards but the reward/incentive must be explicitly linked to the achievement of the specific target behaviour i.e.

the person receives the reward if they perform the specified behaviour but not if they do not perform the behaviour. This

can include self-reward. Provisions of rewards for completing intervention components or materials are not instances of this

technique. References to provision of incentives for being more physically active are not instances of this technique unless

information about contingency to the performance of the target behaviour is provided. NB: Check the distinction between

this and techniques 7 (action planning) and 17 (prompt self-monitoring of behavioural outcome) and 19 (provide feedback

on performance).

14. Shaping

Contingent rewards are first provided for any approximation to the target behaviour e.g. for any increase in physical activity.

Then, later, only a more demanding performance, e.g. brisk walking for 10 min on 3 days a week would be rewarded. Thus,

this is graded use of contingent rewards over time.

15. Prompting generalisation of a target behaviour

Once behaviour is performed in a particular situation, the person is encouraged or helped to try it in another situation. The

idea is to ensure that the behaviour is not tied to one situation but becomes a more integrated part of the person’s life that

can be performed at a variety of different times and in a variety of contexts.

16. Prompt self-monitoring of behaviour

The person is asked to keep a record of specified behaviour(s) as a method for changing behaviour. This should be an explicitly

stated intervention component, as opposed to occurring as part of completing measures for research purposes. This could

e.g. take the form of a diary or completing a questionnaire about their behaviour, in terms of type, frequency, duration and/or

intensity. Check the distinction between this and techniques 17 (prompt self-monitoring of behavioural outcome).

17. Prompt self-monitoring of behavioural outcome

The person is asked to keep a record of specified measures expected to be influenced by the behaviour change, e.g. blood

pressure, blood glucose, weight loss, physical fitness. NB: It must be reported as part of the intervention, rather than only as

an outcome measure. Check the distinction between this and techniques 16 (Prompt self-monitoring of behaviour).

18. Prompting focus on past success

Involves instructing the person to think about or list previous successes in performing the behaviour (or parts of it). NB: This

is not just encouragement but a clear focus on the person’s past behaviour. It is also not feedback because it refers to

behaviour preceded the intervention.

19. Provide feedback on performance

This involves providing the participant with data about their own recorded behaviour (e.g. following technique 16 (prompt

self-monitoring of behaviour)) or commenting on a person’s behavioural performance (e.g. identifying a discrepancy with

between behavioural performance and a set goal – see techniques 5 (Goal setting – behaviour) and 7 (action planning) – or a

discrepancy between one’s own performance in relation to others’ – note this could also involve technique 28 (Facilitate

social comparison).

20. Provide information on where and when to perform the behaviour

Involves telling the person about when and where they might be able to perform the behaviour this e.g. tips on places and

times participants can access local exercise classes. This can be in either verbal or written form. NB: Check whether there are

also instances of technique 21 (Provide instruction on how to perform the behaviour).

21. Provide instruction on how to perform the behaviour

Involves telling the person how to perform behaviour or preparatory behaviours, either verbally or in written form. Examples

of instructions include; how to use gym equipment (without getting on and showing the participant), instruction on suitable

138541-Willems_BNW.indd 19 31-10-19 10:07

20

clothing, and tips on how to take action Showing a person how to perform a behaviour without verbal instruction would be

an instance of technique 22 only. NB: Check whether there are also instances of techniques 5, 7, 8, 9 and 22. Instructions to

follow a specific diet or programme of exercise without instructions how to perform the behaviours are not included in this

definition. Cooking and exercise classes as well as personal trainers and recipes should always be coded as this technique,

but may also be coded as 22 (model/demonstrate the behaviour).

22. Model/Demonstrate the behaviour

Involves showing the person how to perform a behaviour e.g. through physical or visual demonstrations of behavioural

performance, in person or remotely. NB: This is distinct from just providing instruction (technique 21) because in

‘demonstration’ the person is able to observe the behaviour being enacted. This technique and techniques 21 (Provide

instruction on how to perform the behaviour) and may be used separately or together. Instructing parents or peers to perform

the target behaviour is not an instance of this technique as fidelity would be uncertain.

23. Teach to use prompts/cues

The person is taught to identify environmental prompts which can be used to remind them to perform the behaviour (or to

perform an alternative, incompatible behaviour in the case of behaviours to be reduced). Cues could include times of day,

particular contexts or technologies such as mobile phone alerts which prompt them to perform the target behaviour. NB:

This technique could be used independently or in conjunction with techniques 5 (goal setting - behaviour) and 7 (action

planning; see also 24 (environmental restructuring)).

24. Environmental restructuring

The person is prompted to alter the environment in ways so that it is more supportive of the target behaviour e.g. altering

cues or reinforcers. For example, they might be asked to lock up or throw away or their high calorie snacks or take their

running shoes to work. Interventions in which the interveners directly modify environmental variables (e.g. the way food is

displayed in shops, provision of sports facilities) are not covered by this taxonomy and should be coded independently.

25. Agree behavioural contract

Must involve written agreement on the performance of an explicitly specified behaviour so that there is a written record of

the person’s resolution witnessed by another.

26. Prompt practice

Prompt the person to rehearse and repeat the behaviour or preparatory behaviours numerous times. Note this will also

include parts of the behaviour e.g. refusal skills in relation to unhealthy snacks. This could be described as ‘building habits or

routines’ but is still practice so long as the person is prompted to try the behaviour (or parts of it) during the intervention or

practice between intervention sessions, e.g. as ‘homework’.

27. Use of follow-up prompts

Intervention components are gradually reduced in intensity, duration and frequency over time, e.g. letters or telephone calls

instead of face to face and/or provided at longer time intervals.

28. Facilitate social comparison

Involves explicitly drawing attention to others’ performance to elicit comparisons. NB: The fact the intervention takes place

in a group setting, or have been placed in groups on the basis of shared characteristics, does not necessarily mean social

comparison is actually taking place. Social support may also be encouraged in such settings and this would then involve

technique 29 (plan social support/social change). Group classes may also involve instruction (technique 21 (provide

instruction on how to perform the behaviour)) demonstration (technique 22 (model/demonstrate the behaviour)) and

practice (technique 26 (prompt practice)).

29. Plan social support/social change

21

Involves prompting the person to plan how to elicit social support from other people to help him/her achieve their target

behaviour/outcome. This will include support during interventions e.g. setting up a ‘buddy’ system or other forms of support

and following the intervention including support provided by the individuals delivering the intervention, partner, friends and

family.

30. Prompt identification as role model/position advocate

Involves focusing on how the person may be an example to others and affect their behaviour, e.g. being a good example to

children. Also includes providing opportunities for participants to persuade others of the importance of adopting/changing

the behaviour, for example, giving a talk or running a peer-led session.

31. Prompt anticipated regret

Involves inducing expectations of future regret about the performance or non-performance of a behaviour. This includes

focusing on how the person will feel in the future and specifically whether they will feel regret or feel sorry that they did or

did not take a different course of action. Do not also code instances of this technique as the more generic providing

information on consequences (techniques 1 (provide information on consequences of behaviour in general and 2 (provide

information on consequences of behaviour to the individual)).

32. Fear arousal

Involves presentation of risk and/or mortality information relevant to the behaviour as emotive images designed to evoke a

fearful response (e.g. ‘smoking kills!’ or images of the grim reaper). Do not also code instances of this technique as the more

generic providing information on consequences (techniques 1 (provide information on consequences of behaviour in general)

and 2 (provide information on consequences of behaviour to the individual)).

33. Prompt self-talk

Encourage the person to use talk to themselves (aloud or silently) before and during planned behaviours to encourage,

support and maintain action.

34. Prompt use of imagery

Teach the person to imagine successfully performing the behaviour or to imagine finding it easy to perform the behaviour,

including component or easy versions of the behaviour. Distinct from recalling instances of previous success without imagery

(technique 18 (prompting focus on past success)).

35. Relapse prevention/coping planning

This relates to planning how to maintain behaviour that has been changed. The person is prompted to identify in advance

situations in which the changed behaviour may not be maintained and develop strategies to avoid or manage those situations.

Contrast with techniques 7 (action planning) and 8 (barrier identification/problem solving) which are about initiating

behaviour change.

36. Stress management/emotional control training

This is a set of specific techniques (e.g. progressive relaxation) which do not target the behaviour directly but seek to reduce

anxiety and stress to facilitate the performance of the behaviour. It might also include techniques designed to reduce negative

emotions or control mood or feelings that may interfere with performance of the behaviour, and/or to increase positive

emotions that might help with the performance of the behaviour. NB: Check whether there are any instances of technique 8

(barrier identification/ problem solving), which includes identifying emotional barriers to performance, in contrast to the

current technique, which addresses stress and emotions, whether they have been identified as barriers or not.

37. Motivational interviewing

This is a clinical method including a specific set of techniques involving prompting the person to engage in change talk in

order to minimise resistance and resolve ambivalence to change (includes motivational counselling). NB: Only rate this

138541-Willems_BNW.indd 20 31-10-19 10:07

20

clothing, and tips on how to take action Showing a person how to perform a behaviour without verbal instruction would be

an instance of technique 22 only. NB: Check whether there are also instances of techniques 5, 7, 8, 9 and 22. Instructions to

follow a specific diet or programme of exercise without instructions how to perform the behaviours are not included in this

definition. Cooking and exercise classes as well as personal trainers and recipes should always be coded as this technique,

but may also be coded as 22 (model/demonstrate the behaviour).

22. Model/Demonstrate the behaviour

Involves showing the person how to perform a behaviour e.g. through physical or visual demonstrations of behavioural

performance, in person or remotely. NB: This is distinct from just providing instruction (technique 21) because in

‘demonstration’ the person is able to observe the behaviour being enacted. This technique and techniques 21 (Provide

instruction on how to perform the behaviour) and may be used separately or together. Instructing parents or peers to perform

the target behaviour is not an instance of this technique as fidelity would be uncertain.

23. Teach to use prompts/cues

The person is taught to identify environmental prompts which can be used to remind them to perform the behaviour (or to

perform an alternative, incompatible behaviour in the case of behaviours to be reduced). Cues could include times of day,

particular contexts or technologies such as mobile phone alerts which prompt them to perform the target behaviour. NB:

This technique could be used independently or in conjunction with techniques 5 (goal setting - behaviour) and 7 (action

planning; see also 24 (environmental restructuring)).

24. Environmental restructuring

The person is prompted to alter the environment in ways so that it is more supportive of the target behaviour e.g. altering

cues or reinforcers. For example, they might be asked to lock up or throw away or their high calorie snacks or take their

running shoes to work. Interventions in which the interveners directly modify environmental variables (e.g. the way food is

displayed in shops, provision of sports facilities) are not covered by this taxonomy and should be coded independently.

25. Agree behavioural contract

Must involve written agreement on the performance of an explicitly specified behaviour so that there is a written record of

the person’s resolution witnessed by another.

26. Prompt practice

Prompt the person to rehearse and repeat the behaviour or preparatory behaviours numerous times. Note this will also

include parts of the behaviour e.g. refusal skills in relation to unhealthy snacks. This could be described as ‘building habits or

routines’ but is still practice so long as the person is prompted to try the behaviour (or parts of it) during the intervention or

practice between intervention sessions, e.g. as ‘homework’.

27. Use of follow-up prompts

Intervention components are gradually reduced in intensity, duration and frequency over time, e.g. letters or telephone calls

instead of face to face and/or provided at longer time intervals.

28. Facilitate social comparison

Involves explicitly drawing attention to others’ performance to elicit comparisons. NB: The fact the intervention takes place

in a group setting, or have been placed in groups on the basis of shared characteristics, does not necessarily mean social

comparison is actually taking place. Social support may also be encouraged in such settings and this would then involve

technique 29 (plan social support/social change). Group classes may also involve instruction (technique 21 (provide

instruction on how to perform the behaviour)) demonstration (technique 22 (model/demonstrate the behaviour)) and

practice (technique 26 (prompt practice)).

29. Plan social support/social change

21

Involves prompting the person to plan how to elicit social support from other people to help him/her achieve their target

behaviour/outcome. This will include support during interventions e.g. setting up a ‘buddy’ system or other forms of support

and following the intervention including support provided by the individuals delivering the intervention, partner, friends and

family.

30. Prompt identification as role model/position advocate

Involves focusing on how the person may be an example to others and affect their behaviour, e.g. being a good example to

children. Also includes providing opportunities for participants to persuade others of the importance of adopting/changing

the behaviour, for example, giving a talk or running a peer-led session.

31. Prompt anticipated regret

Involves inducing expectations of future regret about the performance or non-performance of a behaviour. This includes

focusing on how the person will feel in the future and specifically whether they will feel regret or feel sorry that they did or

did not take a different course of action. Do not also code instances of this technique as the more generic providing

information on consequences (techniques 1 (provide information on consequences of behaviour in general and 2 (provide

information on consequences of behaviour to the individual)).

32. Fear arousal

Involves presentation of risk and/or mortality information relevant to the behaviour as emotive images designed to evoke a

fearful response (e.g. ‘smoking kills!’ or images of the grim reaper). Do not also code instances of this technique as the more

generic providing information on consequences (techniques 1 (provide information on consequences of behaviour in general)

and 2 (provide information on consequences of behaviour to the individual)).

33. Prompt self-talk

Encourage the person to use talk to themselves (aloud or silently) before and during planned behaviours to encourage,

support and maintain action.

34. Prompt use of imagery

Teach the person to imagine successfully performing the behaviour or to imagine finding it easy to perform the behaviour,

including component or easy versions of the behaviour. Distinct from recalling instances of previous success without imagery

(technique 18 (prompting focus on past success)).

35. Relapse prevention/coping planning

This relates to planning how to maintain behaviour that has been changed. The person is prompted to identify in advance

situations in which the changed behaviour may not be maintained and develop strategies to avoid or manage those situations.

Contrast with techniques 7 (action planning) and 8 (barrier identification/problem solving) which are about initiating

behaviour change.

36. Stress management/emotional control training

This is a set of specific techniques (e.g. progressive relaxation) which do not target the behaviour directly but seek to reduce

anxiety and stress to facilitate the performance of the behaviour. It might also include techniques designed to reduce negative

emotions or control mood or feelings that may interfere with performance of the behaviour, and/or to increase positive

emotions that might help with the performance of the behaviour. NB: Check whether there are any instances of technique 8

(barrier identification/ problem solving), which includes identifying emotional barriers to performance, in contrast to the

current technique, which addresses stress and emotions, whether they have been identified as barriers or not.

37. Motivational interviewing

This is a clinical method including a specific set of techniques involving prompting the person to engage in change talk in

order to minimise resistance and resolve ambivalence to change (includes motivational counselling). NB: Only rate this

138541-Willems_BNW.indd 21 31-10-19 10:07

22

technique if explicitly referred to by name, not if one identifies specific elements of it, this may happen if you have prior

experience with this technique.

38. Time management

This includes any technique designed to teach a person how to manage their time in order to make time for the behaviour.

These techniques are not directed towards performance of target behaviour but rather seek to facilitate it by freeing up times

when it could be performed. NB: Only rate this technique if explicitly referred to by name, not if one identifies specific

elements of it, this may happen if you have prior experience with this technique.

39. General communication skills training

This includes any technique directed at general communication skills but not directed towards a particular behaviour change.

Often this may include role play and group work focusing on listening skills or assertive skills. NB: Practicing a particular

behaviour-specific interpersonal negotiation e.g. refusal skills in relation to cigarettes or alcohol would not be an instance of

this technique.

40. Stimulate anticipation of future rewards

Create anticipation of future rewards without necessarily reinforcing behaviour throughout the active period of the

intervention. Code this technique when participants are told at the onset that they will be rewarded based on behavioural

achievement.

138541-Willems_BNW.indd 22 31-10-19 10:07

22

technique if explicitly referred to by name, not if one identifies specific elements of it, this may happen if you have prior

experience with this technique.

38. Time management

This includes any technique designed to teach a person how to manage their time in order to make time for the behaviour.

These techniques are not directed towards performance of target behaviour but rather seek to facilitate it by freeing up times

when it could be performed. NB: Only rate this technique if explicitly referred to by name, not if one identifies specific

elements of it, this may happen if you have prior experience with this technique.

39. General communication skills training

This includes any technique directed at general communication skills but not directed towards a particular behaviour change.

Often this may include role play and group work focusing on listening skills or assertive skills. NB: Practicing a particular

behaviour-specific interpersonal negotiation e.g. refusal skills in relation to cigarettes or alcohol would not be an instance of

this technique.

40. Stimulate anticipation of future rewards

Create anticipation of future rewards without necessarily reinforcing behaviour throughout the active period of the

intervention. Code this technique when participants are told at the onset that they will be rewarded based on behavioural

achievement.

138541-Willems_BNW.indd 23 31-10-19 10:07

Chapter 2

Effects of lifestyle change interventions for people with intellectual

disabilities: Systematic review and meta-analysis of randomized controlled

trials

Mariël Willems

Aly Waninge

Thessa I.M. Hilgenkamp

Pepijn van Empelen

Wim P. Krijnen

Cees P. Van der Schans

Craig A. Melville

Journal of Applied Research in Intellectual Disabilities, 2018, 31(6), 949-961

138541-Willems_BNW.indd 24 31-10-19 10:07

Chapter 2

Effects of lifestyle change interventions for people with intellectual

disabilities: Systematic review and meta-analysis of randomized controlled

trials

Mariël Willems

Aly Waninge


Pepijn van Empelen

Wim P. Krijnen


Craig A. Melville

Journal of Applied Research in Intellectual Disabilities, 2018, 31(6), 949-961

138541-Willems_BNW.indd 25 31-10-19 10:07

26

ABSTRACT

Background: Promotion of a healthy lifestyle for people with intellectual disabilities is important; however, the

effectiveness of lifestyle change interventions is unclear. Aims: This research will examine the effectiveness of

lifestyle change interventions for people with intellectual disabilities.

Methods and Procedures: Randomized controlled trials (RCTs) of lifestyle change interventions for people with

intellectual disabilities were included in a systematic review and meta- analysis. Data on study and intervention

characteristics were extracted, as well as data on outcome measures and results. Internal validity of the selected

papers was assessed using the Cochrane Collaboration’s risk bias tool.

Outcomes and Results: Eight RCTs were included. Multiple outcome measures were used, whereby outcome

measures targeting environmental factors and participation were lacking and personal outcome measures were

mostly used by a single study. Risks of bias were found for all studies. Meta- analysis showed some effectiveness

for lifestyle change interventions, and a statistically significant decrease was found for waist circumference.

Conclusion and Implications: Some effectiveness was found for lifestyle change interventions for people with

intellectual disabilities. However, the effects were only statistically significant for waist circumference, so current

lifestyle change interventions may not be optimally tailored to meet the needs of people with intellectual

disabilities.

27

1 | INTRODUCTION

Adults with intellectual disabilities experience greater health risks compared to the general population, including

overweight and obesity (Melville, Hamilton, Hankey, Miller, & Boyle, 2007; Waninge et al., 2013; Yamaki, 2005),

physical inactivity (Hilgenkamp, Reis, van Wijck, & Evenhuis, 2012; Peterson, Janz, & Lowe, 2008) and high levels

of sedentary behaviour (Melville et al., 2017). An unhealthy lifestyle is a risk factor for a shorter life expectancy

(Bittles et al., 2002; Melville et al., 2007; Patja, Iivanainen, Vesala, Oksanen, & Ruoppila, 2000), diminished quality

of life (Pett et al., 2013) and higher dependence in performing activities in daily living (Hilgenkamp, Van Wijck, &

Evenhuis, 2011; Van Schijndel-Speet, Evenhuis, Van Wijck, & Echteld, 2014; Van Schijndel-Speet, Evenhuis, Van

Wijck, Van Empelen, & Echteld, 2014). To reduce health inequalities and improve the health of people with

intellectual disabilities, promotion of healthier lifestyles is important (Alesi & Pepi, 2015).

In the general population, lifestyle change interventions are effective in improving health outcomes (Avery et al.,

2015; Dusseldorp, Van Genugten, Van Buuren, Verheijden, & Van Empelen, 2014; Fjeldsjoe, Nuehaus, Winkler,

& Eakin, 2011). For people with intellectual disabilities, there have been many studies of interventions that aim

to improve health by targeting nutrition, physical activity or both (Willems, Hilgenkamp, Havik, Waninge, &

Melville, 2017). However, a number of methodological issues complicate general conclusions about the

effectiveness on lifestyle change, like the inappropriate definition of important concepts, for example “follow-

up,” level of intellectual disability and use of outcome measures (Willems et al., 2017). Other methodological

issues reported previously include inadequate reporting of intervention content, small sample sizes and

unsustainable implementation (Bartlo & Klein, 2011; Heller, McCubbin, Drum, & Peterson, 2011; Hithersay,

Strydom, Moulster, & Buszewicz, 2014; Maïano, Normand, Aimé, & Bégarie, 2014; Ogg-Groenendaal, Hermans,

& Claessens, 2014; Öhman, Savikko, Strandberg, & Pitkälä, 2014; Willems et al., 2017). In addition, a previous

review found that only a limited number of effect studies described the use of an underlying theory to design

the intervention (Willems et al., 2017), which is necessary to understand why effects take place or not. Missing

information about demographics, outcome measures, dropout rates and follow-up measurements further limits

interpretation of the results (Willems et al., 2017). Due to these limitations, robust evidence on the influence

and effectiveness of lifestyle change interventions for people with intellectual disabilities is scarce (Casey &

Rasmussen, 2013; Hithersay et al., 2014; Jinks, Cotton, & Rylance, 2011; Maïano et al., 2014; Spanos, Melville, &

Hankey, 2013).

Reviews for the general population found heterogeneous evidence for the effectiveness of lifestyle change

interventions in changing health outcomes (Dombrowski et al., 2012; Foster, Hillsdon, Thorogood, Kaur, &

Wedatilake, 2005; Greaves et al., 2011; Michie, Abraham, Whittington, McAteer, & Gupta, 2009; Ogilvie et al.,

2007) as some interventions were very effective in changing health behaviour whereas other interventions lack

effectiveness. Despite these differences, based on outcomes of various meta-analyses on behavioural change

interventions targeting physical activity and dietary intake of the general population, an average effect size (g)

of 0.31 is achieved on physical activity and behaviour, as well as weight loss (Dombrowski et al., 2012; Michie et

al., 2009). Some studies of lifestyle change interventions for people with intellectual disabilities have reported

small significant effects on health outcomes (Curtin et al., 2013; Marks, Sisirak, & Chang, 2013; Van Schijndel-

138541-Willems_BNW.indd 26 31-10-19 10:07

26

ABSTRACT

Background: Promotion of a healthy lifestyle for people with intellectual disabilities is important; however, the

effectiveness of lifestyle change interventions is unclear. Aims: This research will examine the effectiveness of

lifestyle change interventions for people with intellectual disabilities.

Methods and Procedures: Randomized controlled trials (RCTs) of lifestyle change interventions for people with

intellectual disabilities were included in a systematic review and meta- analysis. Data on study and intervention

characteristics were extracted, as well as data on outcome measures and results. Internal validity of the selected

papers was assessed using the Cochrane Collaboration’s risk bias tool.

Outcomes and Results: Eight RCTs were included. Multiple outcome measures were used, whereby outcome

measures targeting environmental factors and participation were lacking and personal outcome measures were

mostly used by a single study. Risks of bias were found for all studies. Meta- analysis showed some effectiveness

for lifestyle change interventions, and a statistically significant decrease was found for waist circumference.

Conclusion and Implications: Some effectiveness was found for lifestyle change interventions for people with

intellectual disabilities. However, the effects were only statistically significant for waist circumference, so current

lifestyle change interventions may not be optimally tailored to meet the needs of people with intellectual

disabilities.

27

1 | INTRODUCTION

Adults with intellectual disabilities experience greater health risks compared to the general population, including

overweight and obesity (Melville, Hamilton, Hankey, Miller, & Boyle, 2007; Waninge et al., 2013; Yamaki, 2005),

physical inactivity (Hilgenkamp, Reis, van Wijck, & Evenhuis, 2012; Peterson, Janz, & Lowe, 2008) and high levels

of sedentary behaviour (Melville et al., 2017). An unhealthy lifestyle is a risk factor for a shorter life expectancy

(Bittles et al., 2002; Melville et al., 2007; Patja, Iivanainen, Vesala, Oksanen, & Ruoppila, 2000), diminished quality

of life (Pett et al., 2013) and higher dependence in performing activities in daily living (Hilgenkamp, Van Wijck, &

Evenhuis, 2011; Van Schijndel-Speet, Evenhuis, Van Wijck, & Echteld, 2014; Van Schijndel-Speet, Evenhuis, Van

Wijck, Van Empelen, & Echteld, 2014). To reduce health inequalities and improve the health of people with

intellectual disabilities, promotion of healthier lifestyles is important (Alesi & Pepi, 2015).

In the general population, lifestyle change interventions are effective in improving health outcomes (Avery et al.,

2015; Dusseldorp, Van Genugten, Van Buuren, Verheijden, & Van Empelen, 2014; Fjeldsjoe, Nuehaus, Winkler,

& Eakin, 2011). For people with intellectual disabilities, there have been many studies of interventions that aim

to improve health by targeting nutrition, physical activity or both (Willems, Hilgenkamp, Havik, Waninge, &

Melville, 2017). However, a number of methodological issues complicate general conclusions about the

effectiveness on lifestyle change, like the inappropriate definition of important concepts, for example “follow-

up,” level of intellectual disability and use of outcome measures (Willems et al., 2017). Other methodological

issues reported previously include inadequate reporting of intervention content, small sample sizes and

unsustainable implementation (Bartlo & Klein, 2011; Heller, McCubbin, Drum, & Peterson, 2011; Hithersay,

Strydom, Moulster, & Buszewicz, 2014; Maïano, Normand, Aimé, & Bégarie, 2014; Ogg-Groenendaal, Hermans,

& Claessens, 2014; Öhman, Savikko, Strandberg, & Pitkälä, 2014; Willems et al., 2017). In addition, a previous

review found that only a limited number of effect studies described the use of an underlying theory to design

the intervention (Willems et al., 2017), which is necessary to understand why effects take place or not. Missing

information about demographics, outcome measures, dropout rates and follow-up measurements further limits

interpretation of the results (Willems et al., 2017). Due to these limitations, robust evidence on the influence

and effectiveness of lifestyle change interventions for people with intellectual disabilities is scarce (Casey &

Rasmussen, 2013; Hithersay et al., 2014; Jinks, Cotton, & Rylance, 2011; Maïano et al., 2014; Spanos, Melville, &

Hankey, 2013).

Reviews for the general population found heterogeneous evidence for the effectiveness of lifestyle change

interventions in changing health outcomes (Dombrowski et al., 2012; Foster, Hillsdon, Thorogood, Kaur, &

Wedatilake, 2005; Greaves et al., 2011; Michie, Abraham, Whittington, McAteer, & Gupta, 2009; Ogilvie et al.,

2007) as some interventions were very effective in changing health behaviour whereas other interventions lack

effectiveness. Despite these differences, based on outcomes of various meta-analyses on behavioural change

interventions targeting physical activity and dietary intake of the general population, an average effect size (g)

of 0.31 is achieved on physical activity and behaviour, as well as weight loss (Dombrowski et al., 2012; Michie et

al., 2009). Some studies of lifestyle change interventions for people with intellectual disabilities have reported

small significant effects on health outcomes (Curtin et al., 2013; Marks, Sisirak, & Chang, 2013; Van Schijndel-

138541-Willems_BNW.indd 27 31-10-19 10:07

28

Speet, Evenhuis, Van Wijck, Montfort, & Echteld, 2016), other studies did not find significant effects (Bergström,

Hagströmer, Hagberg, & Elinder, 2013; Melville et al., 2015; Shields & Taylor, 2015). Previous systematic reviews

of lifestyle change interventions for adults with intellectual disabilities have described and compared the content

of published lifestyle interventions or health promotion programmes. However, to date, the effectiveness of

these interventions and programmes has not been systematically analysed. Meta-analyses of the effects of

lifestyle change interventions could reveal topics for future research and could give more insight if the current

lifestyle change interventions really change the lifestyle of people with intellectual disabilities. Therefore, the

current systematic review and meta-analysis aim to determine the effects of lifestyle change interventions,

aimed at physical activity, nutrition or both physical activity and nutrition for people with intellectual disabilities.

2 | METHODS

The Preferred Reporting Items for Systematic Reviews and Meta- Analyses (PRISMA) (Moher, Liberati, Tetzlaff,

& Altman, 2009) and the Cochrane Handbook for systematic review of interventions (Higgins et al., 2011) were

used to guide this systematic review and meta- analysis.

2.1 | Search strategy

A search strategy (see Appendix 1) was developed with a research librarian and used to retrieve papers from

seven electronic databases: Embase.com, Medline (OvidSP), Web of Science, PsycINFO (OvidSP) Cochrane,

PubMed publisher and Google Scholar. This search was conducted in April 2016. Only peer- reviewed journal

papers, published between 2000 and 2016 and written in English, were eligible for inclusion. The full search

strategy is available from the corresponding author.

2.2 | Selection criteria for studies

2.2.1 | Inclusion criteria

Papers were eligible if they reported outcomes for lifestyle change interventions for adults with intellectual

disabilities, aged over 18 years, with all levels of intellectual disabilities. Only studies using a randomized

controlled trial (RCT) design and explicitly aimed at supporting change in dietary and/or physical activity

behaviour were included. The intervention had to target changes in physical activity (PA) or nutrition (e.g.,

improving nutrition habits, increasing level of physical activity or fitness or reducing weight). Study outcomes

had to include at least one aspect of participants’ PA levels, cardiorespiratory fitness, body composition (e.g.,

weight, body mass index, waist circumference), dietary intake or adherence to PA programmes.

2.2.2 | Exclusion criteria

The present authors excluded studies using interventions focusing only on staff or caregivers of people with

intellectual disabilities and studies discussing interventions for people with autism, schizophrenia or other

psychiatric disorders without explicitly mentioning intellectual disabilities. Studies with study outcomes solely on

improving motor performance or skills, inflammation, oxidative stress, blood composition, muscle mass, solely

improving fitness components other than cardiorespiratory fitness (such as strength, balance, flexibility, reaction

29

time, speed, agility) or on cognitive outcomes, were excluded. Furthermore, interventions using laboratory-

based, as opposed to community- based, training or exercise programmes and interventions with hormone

therapy or other medical treatment for weight control, or interventions focusing on smoking cessation, alcohol

or drug use, were excluded. Studies with less than six participants, review papers, conference abstracts and

editorials were also excluded.

2.2.3 | Screening and selection process

The selection process was conducted independently by two investigators (MW and AW), including title screening,

abstract screening and reading full- text papers to identify studies that met the inclusion criteria. Disagreements

were resolved by consensus discussion. During full- text screening, all full- text papers were available. When

relevant outcome data were missing, the present authors emailed the corresponding author.

2.3 | Data extraction

A data extraction form was developed and tested by two authors (MW and CM). Two reviewers (MW and CM)

independently performed both data extraction. Results were compared, and disagreements were resolved by

consensus discussion. In the case of any remaining uncertainty, a third author (TH) was consulted. Published

protocol papers about the included interventions were also used for data extraction on study design,

intervention characteristics and outcome measures (Bergström et al., 2013; Melville et al., 2015; Van Schijndel-

Speet et al., 2016).

Data extracted from the studies were as follows:

1) General study characteristics (aim of intervention, study design, sample characteristics);

2) Intervention characteristics (short description, theoretical framework, setting, duration, frequency,

intensity, deliverer and mode of delivery of intervention);

3) Outcome measures and results for the outcome measures (mean and standard deviation). The outcome

measures and results are categorized in “functions,” “activities,” “participation,” “personal factors” and

“environmental factors” using the International Classification of Functioning, Disability and Health (ICF)

(World Health Organisation, 2001), with the following underlying constructs:

- Activity: daily physical activity and food intake/nutrition

- Participation: activities of daily living (ADL)

- Functions: body composition, cardiovascular risk factors, physical capacity, flexibility

- Personal factors: quality of life, psychological functioning, perceived health, health literacy

- Environmental factors: social/environmental supports (SESE), work routine.

2.4 | Risk of bias assessment

The internal validity of the selected papers was assessed by two authors (MW & CM), using the Cochrane

Collaboration’s tool for assessing risk of bias (Higgins et al., 2011). This risk of bias tool includes six domains of

bias, namely selection bias, performance bias, detection bias, attrition bias, reporting bias and other bias (Higgins

138541-Willems_BNW.indd 28 31-10-19 10:07

28

Speet, Evenhuis, Van Wijck, Montfort, & Echteld, 2016), other studies did not find significant effects (Bergström,

Hagströmer, Hagberg, & Elinder, 2013; Melville et al., 2015; Shields & Taylor, 2015). Previous systematic reviews

of lifestyle change interventions for adults with intellectual disabilities have described and compared the content

of published lifestyle interventions or health promotion programmes. However, to date, the effectiveness of

these interventions and programmes has not been systematically analysed. Meta-analyses of the effects of

lifestyle change interventions could reveal topics for future research and could give more insight if the current

lifestyle change interventions really change the lifestyle of people with intellectual disabilities. Therefore, the

current systematic review and meta-analysis aim to determine the effects of lifestyle change interventions,

aimed at physical activity, nutrition or both physical activity and nutrition for people with intellectual disabilities.

2 | METHODS

The Preferred Reporting Items for Systematic Reviews and Meta- Analyses (PRISMA) (Moher, Liberati, Tetzlaff,

& Altman, 2009) and the Cochrane Handbook for systematic review of interventions (Higgins et al., 2011) were

used to guide this systematic review and meta- analysis.


A search strategy (see Appendix 1) was developed with a research librarian and used to retrieve papers from

seven electronic databases: Embase.com, Medline (OvidSP), Web of Science, PsycINFO (OvidSP) Cochrane,

PubMed publisher and Google Scholar. This search was conducted in April 2016. Only peer- reviewed journal

papers, published between 2000 and 2016 and written in English, were eligible for inclusion. The full search

strategy is available from the corresponding author.



Papers were eligible if they reported outcomes for lifestyle change interventions for adults with intellectual

disabilities, aged over 18 years, with all levels of intellectual disabilities. Only studies using a randomized

controlled trial (RCT) design and explicitly aimed at supporting change in dietary and/or physical activity

behaviour were included. The intervention had to target changes in physical activity (PA) or nutrition (e.g.,

improving nutrition habits, increasing level of physical activity or fitness or reducing weight). Study outcomes

had to include at least one aspect of participants’ PA levels, cardiorespiratory fitness, body composition (e.g.,

weight, body mass index, waist circumference), dietary intake or adherence to PA programmes.


The present authors excluded studies using interventions focusing only on staff or caregivers of people with

intellectual disabilities and studies discussing interventions for people with autism, schizophrenia or other

psychiatric disorders without explicitly mentioning intellectual disabilities. Studies with study outcomes solely on

improving motor performance or skills, inflammation, oxidative stress, blood composition, muscle mass, solely

improving fitness components other than cardiorespiratory fitness (such as strength, balance, flexibility, reaction

29

time, speed, agility) or on cognitive outcomes, were excluded. Furthermore, interventions using laboratory-

based, as opposed to community- based, training or exercise programmes and interventions with hormone

therapy or other medical treatment for weight control, or interventions focusing on smoking cessation, alcohol

or drug use, were excluded. Studies with less than six participants, review papers, conference abstracts and

editorials were also excluded.

2.2.3 | Screening and selection process

The selection process was conducted independently by two investigators (MW and AW), including title screening,

abstract screening and reading full- text papers to identify studies that met the inclusion criteria. Disagreements

were resolved by consensus discussion. During full- text screening, all full- text papers were available. When

relevant outcome data were missing, the present authors emailed the corresponding author.


A data extraction form was developed and tested by two authors (MW and CM). Two reviewers (MW and CM)

independently performed both data extraction. Results were compared, and disagreements were resolved by

consensus discussion. In the case of any remaining uncertainty, a third author (TH) was consulted. Published

protocol papers about the included interventions were also used for data extraction on study design,

intervention characteristics and outcome measures (Bergström et al., 2013; Melville et al., 2015; Van Schijndel-

Speet et al., 2016).

Data extracted from the studies were as follows:

1) General study characteristics (aim of intervention, study design, sample characteristics);

2) Intervention characteristics (short description, theoretical framework, setting, duration, frequency,

intensity, deliverer and mode of delivery of intervention);

3) Outcome measures and results for the outcome measures (mean and standard deviation). The outcome

measures and results are categorized in “functions,” “activities,” “participation,” “personal factors” and

“environmental factors” using the International Classification of Functioning, Disability and Health (ICF)

(World Health Organisation, 2001), with the following underlying constructs:

- Activity: daily physical activity and food intake/nutrition

- Participation: activities of daily living (ADL)

- Functions: body composition, cardiovascular risk factors, physical capacity, flexibility

- Personal factors: quality of life, psychological functioning, perceived health, health literacy

- Environmental factors: social/environmental supports (SESE), work routine.

2.4 | Risk of bias assessment

The internal validity of the selected papers was assessed by two authors (MW & CM), using the Cochrane

Collaboration’s tool for assessing risk of bias (Higgins et al., 2011). This risk of bias tool includes six domains of

bias, namely selection bias, performance bias, detection bias, attrition bias, reporting bias and other bias (Higgins

138541-Willems_BNW.indd 29 31-10-19 10:07

30

et al., 2011). Risk of bias assessment involves assigning a judgement to risk of material bias, concerning high, low

or unclear risk. Material bias means “bias of sufficient magnitude to have a notable effect on the results or

conclusions of the trial, recognising the subjectivity of any such judgment” (Higgins et al., 2011). Unclear risk was

scored when information was missing or unclear, or if there was uncertainty. Risk of bias was assessed at study

level. Papers were not rejected based on the internal validity assessment; this assessment gave an overview of

the internal validity of RCT studies in the field of lifestyle interventions in people with intellectual disabilities.

2.5 | Data analyses

Included papers were categorized in the result tables by the aim of the intervention change in physical activity

or physical activity and nutrition. The extracted data were organized by general study and intervention

characteristics, risk of bias, outcome measures and analyses of the effects of the intervention.

Outcome measures were categorized by their aim and underlying construct, and transformed into uniform units

of measurement, for example transforming measurements in pounds (lbs) into kilograms (kg). When studies

reported measurements from different time points, the present authors extracted data from the first time point

following the post- intervention assessment of the outcome measure. The present authors tested heterogeneity

across studies quantitatively using I2 statistic (values of 25%, 50% and 75% respectively, indicate low, moderate

and high heterogeneity). Publication bias was assessed by examining funnel plots for asymmetry.

To determine the effects of lifestyle change interventions, outcomes were analysed on two levels using R v3.3.0

(R Core Team, 2017):

1. Inverse variance weighted random-effects meta-analyses (Borenstein, Hedges, Higgins, & Rothstein,

2009) on standardized change in outcomes measures were performed, only if an outcome measure was used in

three or more studies;

2. The present authors also conducted meta-analyses on underlying constructs of outcome measures using

standardized mean change within groups.

For analysis of change in outcome measures, as well as for analysis on underlying constructs of outcome

measures, only studies using an intervention group and a control group were included to enable comparison on

effectiveness. When a study had more than one relevant intervention group, each group was separately included

in the analysis, according to the guidelines from the Cochrane Handbook for Systematic Reviews of Interventions

(Higgins et al., 2011). In those cases, the control group was split into two groups with equal sample sizes, retaining

mean and standard deviations.

When the mean change or within- group standard deviation was missing for an outcome measure, meta- analysis

was performed with a relatively large within- group correlation of r = .8 between pre- and post- measurement of

the outcome to determine whether there was any effect. When within- group correlation between pre- and post-

measurement of the outcome from other included studies could be calculated for that outcome measure, the

31

present authors compared the used correlation coefficient (r = .8) with the calculated correlation coefficient from

included studies.

For meta- analysis at the construct level, standardized results on multiple outcome measures were included.

When a study used more than one outcome measure related to a construct, the most frequently used outcome

measure was included in the construct meta- analysis. For all meta- analysed outcome measures, leave- one- out

sensitivity analyses were conducted to sustain the validity of the conclusions. Only results of the sensitivity

analyses leading to different conclusions were reported.

3 | RESULTS

3.1 | Literature search

The systematic literature search firstly identified 3,352 papers, resulting in 2,370 papers after removing

duplicates. After the screening and selection process, eight articles passed the inclusion criteria and entered the

systematic review and meta- analysis. One study (Boer & Moss, 2016), described two interventions, which were

used separately in the meta- analysis. Detailed information of the selection process is provided by the flow

diagram in Figure 1.

3.2 | General and intervention characteristics of the studies included

The majority of studies (Table 1) included adults with mild to moderate level of intellectual disabilities as

participants (6/8). There was considerable variation in the number of participants per study, ranging from 16 to

443 participants (Mean 121.5) (Table 1). The setting of the interventions varied between the studies. All the

included studies were recently completed, published between 2012 and 2016 (Table 1).

No interventions focussed on change in nutrition only. Five of eight studies used some theoretical framework

(Table 1), which was social cognitive theory in all five studies. Studies within both study categories (aiming

physical activity or physical activity and nutrition) delivered the intervention face- to- face (8/8), most of them

within a group- wise manner (5/8). Intervention duration ranged from eight weeks to 16 months. Intervention

frequency varied between all studies, ranging from three times in 12 weeks to five times per week. Follow- up

period was used in two studies aiming to improve physical activity (Melville et al., 2015; Van Schijndel- Speet et

al., 2016) and two studies aiming to improve physical activity and nutrition (Curtin et al., 2013; McDermott et al.,

2012). Further intervention characteristics are shown in Table 2.

138541-Willems_BNW.indd 30 31-10-19 10:07

30

et al., 2011). Risk of bias assessment involves assigning a judgement to risk of material bias, concerning high, low

or unclear risk. Material bias means “bias of sufficient magnitude to have a notable effect on the results or

conclusions of the trial, recognising the subjectivity of any such judgment” (Higgins et al., 2011). Unclear risk was

scored when information was missing or unclear, or if there was uncertainty. Risk of bias was assessed at study

level. Papers were not rejected based on the internal validity assessment; this assessment gave an overview of

the internal validity of RCT studies in the field of lifestyle interventions in people with intellectual disabilities.

2.5 | Data analyses

Included papers were categorized in the result tables by the aim of the intervention change in physical activity

or physical activity and nutrition. The extracted data were organized by general study and intervention

characteristics, risk of bias, outcome measures and analyses of the effects of the intervention.

Outcome measures were categorized by their aim and underlying construct, and transformed into uniform units

of measurement, for example transforming measurements in pounds (lbs) into kilograms (kg). When studies

reported measurements from different time points, the present authors extracted data from the first time point

following the post- intervention assessment of the outcome measure. The present authors tested heterogeneity

across studies quantitatively using I2 statistic (values of 25%, 50% and 75% respectively, indicate low, moderate

and high heterogeneity). Publication bias was assessed by examining funnel plots for asymmetry.

To determine the effects of lifestyle change interventions, outcomes were analysed on two levels using R v3.3.0

(R Core Team, 2017):

1. Inverse variance weighted random-effects meta-analyses (Borenstein, Hedges, Higgins, & Rothstein,

2009) on standardized change in outcomes measures were performed, only if an outcome measure was used in

three or more studies;

2. The present authors also conducted meta-analyses on underlying constructs of outcome measures using

standardized mean change within groups.

For analysis of change in outcome measures, as well as for analysis on underlying constructs of outcome

measures, only studies using an intervention group and a control group were included to enable comparison on

effectiveness. When a study had more than one relevant intervention group, each group was separately included

in the analysis, according to the guidelines from the Cochrane Handbook for Systematic Reviews of Interventions

(Higgins et al., 2011). In those cases, the control group was split into two groups with equal sample sizes, retaining

mean and standard deviations.

When the mean change or within- group standard deviation was missing for an outcome measure, meta- analysis

was performed with a relatively large within- group correlation of r = .8 between pre- and post- measurement of

the outcome to determine whether there was any effect. When within- group correlation between pre- and post-

measurement of the outcome from other included studies could be calculated for that outcome measure, the

31

present authors compared the used correlation coefficient (r = .8) with the calculated correlation coefficient from

included studies.

For meta- analysis at the construct level, standardized results on multiple outcome measures were included.

When a study used more than one outcome measure related to a construct, the most frequently used outcome

measure was included in the construct meta- analysis. For all meta- analysed outcome measures, leave- one- out

sensitivity analyses were conducted to sustain the validity of the conclusions. Only results of the sensitivity

analyses leading to different conclusions were reported.

3 | RESULTS

3.1 | Literature search

The systematic literature search firstly identified 3,352 papers, resulting in 2,370 papers after removing

duplicates. After the screening and selection process, eight articles passed the inclusion criteria and entered the

systematic review and meta- analysis. One study (Boer & Moss, 2016), described two interventions, which were

used separately in the meta- analysis. Detailed information of the selection process is provided by the flow

diagram in Figure 1.

3.2 | General and intervention characteristics of the studies included

The majority of studies (Table 1) included adults with mild to moderate level of intellectual disabilities as

participants (6/8). There was considerable variation in the number of participants per study, ranging from 16 to

443 participants (Mean 121.5) (Table 1). The setting of the interventions varied between the studies. All the

included studies were recently completed, published between 2012 and 2016 (Table 1).

No interventions focussed on change in nutrition only. Five of eight studies used some theoretical framework

(Table 1), which was social cognitive theory in all five studies. Studies within both study categories (aiming

physical activity or physical activity and nutrition) delivered the intervention face- to- face (8/8), most of them

within a group- wise manner (5/8). Intervention duration ranged from eight weeks to 16 months. Intervention

frequency varied between all studies, ranging from three times in 12 weeks to five times per week. Follow- up

period was used in two studies aiming to improve physical activity (Melville et al., 2015; Van Schijndel- Speet et

al., 2016) and two studies aiming to improve physical activity and nutrition (Curtin et al., 2013; McDermott et al.,

2012). Further intervention characteristics are shown in Table 2.

138541-Willems_BNW.indd 31 31-10-19 10:07

32

Figure 1 Flow diagram of selection process

3.3 | Outcome measures

A wide variety of outcome measures were used in the studies (n = 58; Table S1). Most outcome measures were

solely used by only one study (39/58). Most outcome measures were aimed at “functions” of the ICF model

(30/58). Outcome measures relevant to “environmental factors” were used the least frequently (2/58). Sixteen

of 58 outcome measures were aimed at “activities” of the ICF model. Three “functions” outcome measures (BMI,

weight, waist circumference) were used in more than three different studies and could therefore be included for

meta- analysis. Three constructs of outcome measures could also be used in meta- analysis as more than three

studies measured these outcomes. These constructs were daily physical activity, body composition and physical

capacity.

Potentially eligible records identified through database searches: N= 3352

Embase.com: 449 Medline (OvidSP): 973Web of science: 411 PsychINFO (OvidSP): 631Cinahl (ebsco): 533 Cochrane: 229PubMed publisher: 27 Google scholar: 100

Excluded after title and abstract screening N = 2216

Records screened by title and abstractN = 2370

Full text articles assessed for eligibility N = 154

Excluded after assessment of full text N = 146Not aimed at lifestyle change (51)Not a RCT (N=39)Not an intervention study (12)Not aimed at persons with intellectual disabilities (N=11)Outcome measures not aimed at lifestyle (N=8)Intervention aimed at staff/caregiver (N=7)Not aimed at adults (N=6)Not a journal article (N=6)Not in English (N=4)No full text available (N=2)

Records after duplicates removedN = 2370

Included articles for qualitative synthesis N=8

33

Tabl

e 1:

Gen

eral

char

acte

ristic

s of t

he st

udie

s

Stud

y Ye

ar

Setti

ng

Popu

latio

n N

Mea

n Ag

e (S

D)

Leve

l of

ID

Sex

(%F)

‘F

unct

ion’

out

com

e m

easu

res,

with

sign

ifica

nt

effe

cts r

epor

ted

‘Act

iviti

es’

outc

ome

m

easu

res,

w

ith

signi

fican

t ef

fect

s re

port

ed

‘Par

ticip

atio

n’

outc

ome

m

easu

res,

w

ith

signi

fican

t ef

fect

s re

port

ed

‘Per

sona

l fa

ctor

s’ ou

tcom

e

mea

sure

s, w

ith

signi

fican

t ef

fect

s re

port

ed

‘Env

ironm

enta

l fa

ctor

s’ ou

tcom

e

mea

sure

s, w

ith

signi

fican

t effe

cts

repo

rted

Inte

rven

tions

aim

ed a

t phy

sical

act

ivity

(4)

Mel

ville

20

15

Part

icipa

nts

hom

e Ad

ults

w

ith ID

10

2 46

.2

All l

evel

s 44

.1

- -

Not

used

-

Not u

sed

Boer

– IT

gr

oup

2016

Un

know

n Ad

ults

w

ith D

S*

21

33.8

(8

.6)

Unkn

own

40.5

Pe

ak o

xyge

n co

nsum

ptio

n (V

O2, L

/min

), re

lativ

e pe

ak

oxyg

en co

nsum

ptio

n (V

O2,

L/m

in),

vent

ilato

r thr

esho

ld

(VT)

, tim

e to

exh

aust

ion,

pea

k he

art r

ate,

wei

ght,

BMI

Not u

sed

Not

used

No

t use

d No

t use

d

Boer

– C

AT

grou

p 20

16

Unkn

own

Adul

ts

with

DS*

21

33

.8

(8.6

) Un

know

n 40

.5

Peak

oxy

gen

cons

umpt

ion

(VO2

, L/m

in),

rela

tive

peak

ox

ygen

cons

umpt

ion

(VO2

, L/

min

), tim

e to

exh

aust

ion,

pe

ak h

eart

rate

, 8-ft

up

and

go,

6-m

inut

e w

alki

ng d

istan

ce

(m),

sit-to

-sta

nd

(am

ount

/30s

), w

eigh

t

Not u

sed

Not

used

No

t use

d No

t use

d

Shie

lds

2015

Un

know

n Yo

ung

adul

ts w

ith

DS*

16

21.4

(3

.2)

Mild

-M

oder

ate

50

- -

Not

used

-

Not u

sed

138541-Willems_BNW.indd 32 31-10-19 10:07

3332


3.3 | Outcome measures

A wide variety of outcome measures were used in the studies (n = 58; Table S1). Most outcome measures were

solely used by only one study (39/58). Most outcome measures were aimed at “functions” of the ICF model

(30/58). Outcome measures relevant to “environmental factors” were used the least frequently (2/58). Sixteen

of 58 outcome measures were aimed at “activities” of the ICF model. Three “functions” outcome measures (BMI,

weight, waist circumference) were used in more than three different studies and could therefore be included for

meta- analysis. Three constructs of outcome measures could also be used in meta- analysis as more than three

studies measured these outcomes. These constructs were daily physical activity, body composition and physical

capacity.


Embase.com: 449 Medline (OvidSP): 973Web of science: 411 PsychINFO (OvidSP): 631Cinahl (ebsco): 533 Cochrane: 229PubMed publisher: 27 Google scholar: 100

Excluded after title and abstract screening N = 2216

Records screened by title and abstractN = 2370


Excluded after assessment of full text N = 146Not aimed at lifestyle change (51)Not a RCT (N=39)Not an intervention study (12)Not aimed at persons with intellectual disabilities (N=11)Outcome measures not aimed at lifestyle (N=8)Intervention aimed at staff/caregiver (N=7)Not aimed at adults (N=6)Not a journal article (N=6)Not in English (N=4)No full text available (N=2)



33

Tabl

e 1:

Gen

eral

char

acte

ristic

s of t

he st

udie

s

Stud

y Ye

ar

Setti

ng

Popu

latio

n N

Mea

n Ag

e (S

D)

Leve

l of

ID

Sex

(%F)

‘F

unct

ion’

out

com

e m

easu

res,

with

sign

ifica

nt

effe

cts r

epor

ted

‘Act

iviti

es’

outc

ome

m

easu

res,

w

ith

signi

fican

t ef

fect

s re

port

ed

‘Par

ticip

atio

n’

outc

ome

m

easu

res,

w

ith

signi

fican

t ef

fect

s re

port

ed

‘Per

sona

l fa

ctor

s’ ou

tcom

e

mea

sure

s, w

ith

signi

fican

t ef

fect

s re

port

ed

‘Env

ironm

enta

l fa

ctor

s’ ou

tcom

e

mea

sure

s, w

ith

signi

fican

t effe

cts

repo

rted

Inte

rven

tions

aim

ed a

t phy

sical

act

ivity

(4)

Mel

ville

20

15

Part

icipa

nts

hom

e Ad

ults

w

ith ID

10

2 46

.2

All l

evel

s 44

.1

- -

Not

used

-

Not u

sed

Boer

– IT

gr

oup

2016

Un

know

n Ad

ults

w

ith D

S*

21

33.8

(8

.6)

Unkn

own

40.5

Pe

ak o

xyge

n co

nsum

ptio

n (V

O2, L

/min

), re

lativ

e pe

ak

oxyg

en co

nsum

ptio

n (V

O2,

L/m

in),

vent

ilato

r thr

esho

ld

(VT)

, tim

e to

exh

aust

ion,

pea

k he

art r

ate,

wei

ght,

BMI

Not u

sed

Not

used

No

t use

d No

t use

d

Boer

– C

AT

grou

p 20

16

Unkn

own

Adul

ts

with

DS*

21

33

.8

(8.6

) Un

know

n 40

.5

Peak

oxy

gen

cons

umpt

ion

(VO2

, L/m

in),

rela

tive

peak

ox

ygen

cons

umpt

ion

(VO2

, L/

min

), tim

e to

exh

aust

ion,

pe

ak h

eart

rate

, 8-ft

up

and

go,

6-m

inut

e w

alki

ng d

istan

ce

(m),

sit-to

-sta

nd

(am

ount

/30s

), w

eigh

t

Not u

sed

Not

used

No

t use

d No

t use

d

Shie

lds

2015

Un

know

n Yo

ung

adul

ts w

ith

DS*

16

21.4

(3

.2)

Mild

-M

oder

ate

50

- -

Not

used

-

Not u

sed

138541-Willems_BNW.indd 33 31-10-19 10:07

34

34

Van

Schi

jnde

l-Sp

eet

2016

Da

y-ac

tivity

ce

ntre

s Ol

der

adul

ts w

ith

ID

151

58.1

M

ild-

Mod

erat

e 55

.0

Syst

olic

bloo

d pr

essu

re (S

BP),

dias

tolic

blo

od p

ress

ure

(DBP

), m

otor

fitn

ess s

tren

gth

(kg/

m),

chol

este

rol (

mm

ol/L

)

Num

ber o

f ste

ps

per d

ay

- Co

gniti

ve

func

tioni

ng

Not u

sed

Inte

rven

tions

aim

ed a

t phy

sical

act

ivity

and

nu

triti

on (4

)

Berg

stro

m

2013

Re

siden

ce

Adul

ts

with

ID

130

37.9

1 M

ild-

Mod

erat

e 56

.9

Wor

k ro

utin

e Nu

mbe

r of s

teps

pe

r day

No

t us

ed

Gene

ral

heal

th

prom

otio

n w

ork

-

Curt

in

2013

Un

know

n Yo

ung

adul

ts w

ith

ID

21

20.5

M

ild-

Mod

erat

e 81

.0

Wei

ght

Mod

erat

e vi

goro

us

phys

ical a

ctiv

ity

Not

used

No

t use

d No

t use

d

McD

erm

ott

2012

Re

siden

ce

Adul

ts

with

ID

443

38.8

M

ild-

Mod

erat

e 50

.3

- -

Not

used

-

Not u

sed

Mar

ks

2013

Re

siden

ce

Adul

ts

with

ID

67

45.2

(7

.6)

Mild

-M

oder

ate

52.2

Sh

ould

er fl

exib

ility

tota

l (cm

), ch

oles

tero

l, gl

ucos

e N

ot u

sed

Not

used

Se

lf-ef

ficac

y,

perc

eive

d he

alth

be

havi

ours

, Nu

triti

on

and

activ

ity

know

ledg

e sc

ale

(NAK

S):

tota

l and

w

eigh

t kn

owle

dge.

Socia

l/env

ironm

enta

l su

ppor

ts fo

r Nu

triti

on (S

ESN)

/ Ex

ercis

e (S

ESE)

35

Tabl

e 2:

Inte

rven

tion

char

acte

ristic

s

St

udy

Year

De

sign

Theo

retic

al fr

amew

ork

Deliv

ery

Num

ber/

fre

quen

cy p

er

wee

k

Inte

rven

tion

dura

tion

(wee

ks)

Follo

w-u

p (w

eeks

)

Inte

rven

tions

aim

ed a

t phy

sical

act

ivity

(4)

Mel

ville

20

15

RCT

Socia

l Cog

nitiv

e Th

eory

, Tr

anst

heor

etica

l Mod

el

Face

-to-fa

ce,

indi

vidu

ally

3

times

in tw

elve

w

eeks

12

12

Boer

20

16

RCT

None

Fa

ce-to

-face

, in

grou

ps

3 12

Un

know

n

Shie

lds

2015

RC

T No

ne

Face

-to-fa

ce

3-5

8 Un

know

n

Van

Schi

jnde

l-Spe

et

2016

RC

T Th

eory

of P

lann

ed B

ehav

iour

, So

cial C

ogni

tive

Theo

ry, B

ehav

iour

Ch

ange

Tec

hniq

ues

Face

-to-fa

ce, i

n gr

oups

3

8 m

onth

s 6

mon

ths

Inte

rven

tions

aim

ed a

t phy

sical

act

ivity

nut

ritio

n (4

)

Berg

stro

m

2013

RC

T So

cial C

ogni

tive

Theo

ry

Face

-to-fa

ce, i

n gr

oups

10

sess

ions

12

-16

mon

ths

Unkn

own

Curt

in

2013

RC

T No

ne

Face

-to-fa

ce, i

n gr

oups

16

sess

ions

6

mon

ths

6 m

onth

s

McD

erm

ott

2012

RC

T So

cial C

ogni

tive

Theo

ry

Face

-to-fa

ce, i

n gr

oups

1

8 10

mon

ths

Mar

ks

2013

RC

T So

cial C

ogni

tive

Theo

ry.

Tran

sthe

oret

ical M

odel

Fa

ce-to

-face

3

12

Unkn

own

138541-Willems_BNW.indd 34 31-10-19 10:07

35

35

Tabl

e 2:

Inte

rven

tion

char

acte

ristic

s

St

udy

Year

De

sign

Theo

retic

al fr

amew

ork

Deliv

ery

Num

ber/

fre

quen

cy p

er

wee

k

Inte

rven

tion

dura

tion

(wee

ks)

Follo

w-u

p (w

eeks

)

Inte

rven

tions

aim

ed a

t phy

sical

act

ivity

(4)

Mel

ville

20

15

RCT

Socia

l Cog

nitiv

e Th

eory

, Tr

anst

heor

etica

l Mod

el

Face

-to-fa

ce,

indi

vidu

ally

3

times

in tw

elve

w

eeks

12

12

Boer

20

16

RCT

None

Fa

ce-to

-face

, in

grou

ps

3 12

Un

know

n

Shie

lds

2015

RC

T No

ne

Face

-to-fa

ce

3-5

8 Un

know

n

Van

Schi

jnde

l-Spe

et

2016

RC

T Th

eory

of P

lann

ed B

ehav

iour

, So

cial C

ogni

tive

Theo

ry, B

ehav

iour

Ch

ange

Tec

hniq

ues

Face

-to-fa

ce, i

n gr

oups

3

8 m

onth

s 6

mon

ths

Inte

rven

tions

aim

ed a

t phy

sical

act

ivity

nut

ritio

n (4

)

Berg

stro

m

2013

RC

T So

cial C

ogni

tive

Theo

ry

Face

-to-fa

ce, i

n gr

oups

10

sess

ions

12

-16

mon

ths

Unkn

own

Curt

in

2013

RC

T No

ne

Face

-to-fa

ce, i

n gr

oups

16

sess

ions

6

mon

ths

6 m

onth

s

McD

erm

ott

2012

RC

T So

cial C

ogni

tive

Theo

ry

Face

-to-fa

ce, i

n gr

oups

1

8 10

mon

ths

Mar

ks

2013

RC

T So

cial C

ogni

tive

Theo

ry.

Tran

sthe

oret

ical M

odel

Fa

ce-to

-face

3

12

Unkn

own

138541-Willems_BNW.indd 35 31-10-19 10:07

36

Table 3: Cochrane risk of bias assessment

* = High risk of bias due to small sample sizes.

** = High risk of bias due to between group differences at baseline.

3.4 | Risk of bias

All PA studies had at least one high score according to risk of bias, ranging from 1 to 5 (Mean 2.63; SD 1.60). The

risk of bias scores in the PA and nutrition category varied where two studies had five high risk of bias scores

(Curtin et al., 2013; Marks et al., 2013), indicating lower intervention quality. Half of the studies had “another

high risk of bias,” which in three studies was due to small sample sizes in the post- intervention group. The results

of the quality assessment are provided in Table 3.

3.5 | Effects of lifestyle change interventions

3.5.1 | Meta- analyses on outcome measures

For the meta- analyses, one study was excluded because there was no control group (Curtin et al., 2013). One

study included two different interventions, which were included separately in the meta- analysis (Boer & Moss,

2016). A single study had missing data and was included after receiving missing data (Bergström et al., 2013).

The meta- analysis of six interventions that measured waist circumference as an outcome (n = 350 participants)

showed a significant decrease on waist circumference (SMD = −1.69, 95% CI = −3.21; −0.18, p = .0287), see also

the Forest plot in Figure S1. Heterogeneity was statistically non- significant (I2 = 0%, Tau2 = <0.0001, p = .78).

Sensitivity analysis found that the decrease in waist circumference became non- significant when two studies

were individually left out of the meta- analysis (Bergström et al., 2013: p = .1948; Van Schijndel- Speet, Evenhuis,

Van Wijck, & Echteld, 2014; Van Schijndel- Speet, Evenhuis, Van Wijck, Van Empelen et al., 2014: p = .0746).

Study Year Item 1:

Random

sequence

generation

Item 2:

Allocation

concealment

Item 3:

Blinding of

participants

and

personnel

Item 4:

Blinding of

outcome

assessments

Item 5:

Incomplete

outcome

data

Item 6:

Selective

reporting

Item 7:

Other

sources

of bias

Interventions aimed at physical activity (4)

Melville 2015 Low Low High Low Low Low Low

Boer 2016 Low High Unclear Low Low Low High*

Shields 2015 Low Low High Low Low Low High*

Van Schijndel-

Speet

2016 High High High High High Low Low

Interventions aimed at both physical activity and nutrition (4)

Bergstrom 2013 Low Low Unclear Unclear High Low Low

Curtin 2013 High High High High Unclear Low High*

McDermott 2012 Unclear Unclear Unclear Unclear High Low Low

Marks 2013 Low High High Low Unclear Low High**

37

Results of the meta- analysis of the five interventions that measured BMI (n = 433 participants) showed no

significant effect on BMI (SMD = 0.15, 95% CI = −0.13; 0.43, p = .2859), see also the Forest plot in Figure S2. There

was no evidence of heterogeneity (I2 = 0%, Tau2 = 0, p = .8911). Sensitivity analyses did not alter these findings.

Five interventions were included in the meta- analysis for weight change (n = 226 participants). Results of the

meta- analysis found no significant effect on weight (SMD = −0.98, 95% CI = −2.20; 0.25, p = .1191), see also the

Forest plot in Figure S3. No evidence of heterogeneity was found (I2 = 0%, Tau2 = 0, p = .93). Sensitivity analyses

did not alter the findings.

3.5.2 | Meta- analysis at the construct level

Meta- analysis at the construct level of change in outcomes was conducted for physical activity (N = 5), body

composition (N = 7) and physical capacity (N = 5), respectively.

Meta- analysis on physical activity included five studies using three different outcome measures (n = 343

participants). The outcomes showed a borderline significant increase in physical activity (SMD = 0.21, 95% CI

= −0.01; 0.42, p = .0581), see also the Forest plot in Figure S4. There was no evidence of heterogeneity (I2 = 0%,

Tau2 = 0, p = .54). Sensitivity analysis showed a significant increase for physical activity (p = .0297) after leaving

out a single study (McDermott et al., 2012).

Seven included studies (n = 612 participants) for body composition used three included outcome measures,

including waist circumference (N = 5), weight (N = 1) and BMI (N = 1). Based on correlation coefficient r = .8,

meta- analysis showed borderline significant effects on body composition (SMD = −0.15, 95% CI = −0.31; 0.01, p

= .0584), see also the Forest plot in Figure S5. There was no evidence of heterogeneity (I2 = 0%, Tau2 = 0, p =

.80). One study included two different interventions, which were separately included in the meta- analysis (Boer

& Moss, 2016). Sensitivity analysis found a significant decrease for body composition after leaving out either of

two studies (Boer & Mossa, IT group, 2016: p = .0297, McDermott et al., 2012: p = .0265).

Based on correlation coefficient r = .8, the four included studies (n = 125 participants) showed no significant

effect on physical capacity (SMD = 0.38, 95% CI = −0.10; 0.86, p = .1227), see also the Forest plot in Figure S6.

There was no evidence of heterogeneity (I2 = 26.2%, Tau2 = 0.0832, p = .2545). One study included two different

interventions, which were separately included in the meta- analysis (Boer & Moss, 2016). Sensitivity analysis

showed significant increase for physical capacity after leaving out a single study (Marks et al., 2013) of the meta-

analysis (p = .0206).

138541-Willems_BNW.indd 36 31-10-19 10:07

36

Table 3: Cochrane risk of bias assessment

* = High risk of bias due to small sample sizes.

** = High risk of bias due to between group differences at baseline.

3.4 | Risk of bias

All PA studies had at least one high score according to risk of bias, ranging from 1 to 5 (Mean 2.63; SD 1.60). The

risk of bias scores in the PA and nutrition category varied where two studies had five high risk of bias scores

(Curtin et al., 2013; Marks et al., 2013), indicating lower intervention quality. Half of the studies had “another

high risk of bias,” which in three studies was due to small sample sizes in the post- intervention group. The results

of the quality assessment are provided in Table 3.

3.5 | Effects of lifestyle change interventions

3.5.1 | Meta- analyses on outcome measures

For the meta- analyses, one study was excluded because there was no control group (Curtin et al., 2013). One

study included two different interventions, which were included separately in the meta- analysis (Boer & Moss,

2016). A single study had missing data and was included after receiving missing data (Bergström et al., 2013).

The meta- analysis of six interventions that measured waist circumference as an outcome (n = 350 participants)

showed a significant decrease on waist circumference (SMD = −1.69, 95% CI = −3.21; −0.18, p = .0287), see also

the Forest plot in Figure S1. Heterogeneity was statistically non- significant (I2 = 0%, Tau2 = <0.0001, p = .78).

Sensitivity analysis found that the decrease in waist circumference became non- significant when two studies

were individually left out of the meta- analysis (Bergström et al., 2013: p = .1948; Van Schijndel- Speet, Evenhuis,

Van Wijck, & Echteld, 2014; Van Schijndel- Speet, Evenhuis, Van Wijck, Van Empelen et al., 2014: p = .0746).

Study Year Item 1:

Random

sequence

generation

Item 2:

Allocation

concealment

Item 3:

Blinding of

participants

and

personnel

Item 4:

Blinding of

outcome

assessments

Item 5:

Incomplete

outcome

data

Item 6:

Selective

reporting

Item 7:

Other

sources

of bias

Interventions aimed at physical activity (4)

Melville 2015 Low Low High Low Low Low Low

Boer 2016 Low High Unclear Low Low Low High*

Shields 2015 Low Low High Low Low Low High*

Van Schijndel-

Speet

2016 High High High High High Low Low

Interventions aimed at both physical activity and nutrition (4)

Bergstrom 2013 Low Low Unclear Unclear High Low Low

Curtin 2013 High High High High Unclear Low High*

McDermott 2012 Unclear Unclear Unclear Unclear High Low Low

Marks 2013 Low High High Low Unclear Low High**

37

Results of the meta- analysis of the five interventions that measured BMI (n = 433 participants) showed no

significant effect on BMI (SMD = 0.15, 95% CI = −0.13; 0.43, p = .2859), see also the Forest plot in Figure S2. There

was no evidence of heterogeneity (I2 = 0%, Tau2 = 0, p = .8911). Sensitivity analyses did not alter these findings.

Five interventions were included in the meta- analysis for weight change (n = 226 participants). Results of the

meta- analysis found no significant effect on weight (SMD = −0.98, 95% CI = −2.20; 0.25, p = .1191), see also the

Forest plot in Figure S3. No evidence of heterogeneity was found (I2 = 0%, Tau2 = 0, p = .93). Sensitivity analyses

did not alter the findings.

3.5.2 | Meta- analysis at the construct level

Meta- analysis at the construct level of change in outcomes was conducted for physical activity (N = 5), body

composition (N = 7) and physical capacity (N = 5), respectively.

Meta- analysis on physical activity included five studies using three different outcome measures (n = 343

participants). The outcomes showed a borderline significant increase in physical activity (SMD = 0.21, 95% CI

= −0.01; 0.42, p = .0581), see also the Forest plot in Figure S4. There was no evidence of heterogeneity (I2 = 0%,

Tau2 = 0, p = .54). Sensitivity analysis showed a significant increase for physical activity (p = .0297) after leaving

out a single study (McDermott et al., 2012).

Seven included studies (n = 612 participants) for body composition used three included outcome measures,

including waist circumference (N = 5), weight (N = 1) and BMI (N = 1). Based on correlation coefficient r = .8,

meta- analysis showed borderline significant effects on body composition (SMD = −0.15, 95% CI = −0.31; 0.01, p

= .0584), see also the Forest plot in Figure S5. There was no evidence of heterogeneity (I2 = 0%, Tau2 = 0, p =

.80). One study included two different interventions, which were separately included in the meta- analysis (Boer

& Moss, 2016). Sensitivity analysis found a significant decrease for body composition after leaving out either of

two studies (Boer & Mossa, IT group, 2016: p = .0297, McDermott et al., 2012: p = .0265).

Based on correlation coefficient r = .8, the four included studies (n = 125 participants) showed no significant

effect on physical capacity (SMD = 0.38, 95% CI = −0.10; 0.86, p = .1227), see also the Forest plot in Figure S6.

There was no evidence of heterogeneity (I2 = 26.2%, Tau2 = 0.0832, p = .2545). One study included two different

interventions, which were separately included in the meta- analysis (Boer & Moss, 2016). Sensitivity analysis

showed significant increase for physical capacity after leaving out a single study (Marks et al., 2013) of the meta-

analysis (p = .0206).

138541-Willems_BNW.indd 37 31-10-19 10:07

38

4 | DISCUSSION

4.1 | Principal findings

This systematic review aimed to examine the effectiveness of lifestyle change interventions for people with

intellectual disabilities. A small number of RCTs were identified and met the criteria for inclusion in the study. A

large number of outcome measures across all ICF categories were used but meta- analyses could only be

performed for a limited number of outcome measures. Lifestyle change interventions were found to lead to a

statistically significant decrease in waist circumference.

Studies mostly used well quantifiable outcome measures including “function” outcome measures such as weight

or 6- min walking distance. However, outcome measures from the ICF categories “environmental factors” and

“participation” were often neglected and personal outcome measures were mostly used by a single study. This

is surprising, because previous research found that environmental barriers, support from others and personal

motivation are relevant to healthy lifestyles for people with intellectual disabilities (Kuijken, Naaldenberg,

Nijhuis- van der Sanden, & Schrojenstein- Lantman de Valk, 2016; Van Schijndel- Speet, Evenhuis, Van Wijck, &

Echteld, 2014; Van Schijndel- Speet, Evenhuis, Van Wijck, Van Empelen et al., 2014). In addition, persons with

intellectual disabilities experience a healthy lifestyle as more than just functional and do relate more personal,

environmental and participation factors to a healthy lifestyle (Kuijken et al., 2016). For future research,

researchers may consider the use of suitable lifestyle outcome measures, which also target environmental and

personal factors as well as participation. Also, the research field could benefit from consensus about important

outcome measures on all ICF categories of healthy living.

Data on change in mean and standard deviations were missing for some studies, which made it necessary to use

a correlation coefficient for the within- group standard deviations for the constructs body composition and

physical capacity. However, we only found borderline significant effects on the construct of body composition

and no significant effects on the construct of physical capacity. Using this seemingly large correlation coefficient

indicates that further research is necessary to determine whether and how lifestyle change interventions can be

effective in improving body composition and physical capacity. For future research, it is important to report all

relevant data in papers to enable comparison.

Our meta- analysis found some evidence supporting the effectiveness of lifestyle change interventions for people

with intellectual disabilities. A significant decrease was found for waist circumference and borderline significant

effects were found at the construct level for physical activity and body composition. The analysis suggests that

the findings from the included studies may have been influenced by several methodological problems, such as

small sample size, short intervention duration, lack of follow- up and loss of participants during the intervention

resulting in incomplete outcome data. No moderators could be detected that could provide insight into

differences in effects across studies. These tentative results may indicate that the current lifestyle change

interventions are not optimally adapted for people with intellectual disabilities. This is in line with a previous

review which found that carer led health promotion interventions for people with intellectual disabilities were

either ineffective or insufficiently tailored to the needs of people with intellectual disabilities (Hithersay et al.,

39

2014). An explanation for the effectiveness of the interventions on waist circumference might be that this

outcome measure is more sensitive than the other outcome measures used. Previous research in the general

population recommends the use of more specific measures of adiposity than BMI, such as waist circumference,

as the former does not distinguish body composition (Burkhauser & Cawley, 2008). For future research, it is

important to use outcome measures appropriate for people with intellectual disabilities. Also, future research

could benefit from tailoring lifestyle change interventions specifically to people with intellectual disabilities.

4.2 | Strengths and weaknesses of the review

This review and meta- analysis aimed to give more insight into the effects of lifestyle change interventions for

people with intellectual disabilities. A strength of this review was the systematic way in which the search and the

data extraction were performed, as well as the inclusion of RCTs. This rigorous method increased the reliability

of our findings and led to new insights in the effectiveness of lifestyle change interventions for people with

intellectual disabilities. Another strength was the use of meta- analysis, which has not been conducted previously

in the field of lifestyle change interventions for people with intellectual disabilities. As only RCTs were included,

the number of investigated lifestyle change interventions for people with intellectual disabilities was somewhat

limited. However, this inclusion criterion was necessary to conduct a reliable meta- analysis. Because of the small

number of RCTs for lifestyle change interventions, some caution is necessary with respect to the interpretation

of the current findings.

4.3 | Implications for future research

As the field of lifestyle change for people with intellectual disabilities is still young, our findings provide some

guidance for future research to improve the lifestyle of people with intellectual disabilities. The field of lifestyle

change for people with intellectual disabilities could benefit from interventions with a stronger methodological

design as mentioned earlier, for example using a tailored behaviour change theory- based design and the use of

suitable, sensitive outcome measures. Furthermore, it is important to determine in which way lifestyle change

interventions can be adapted for people with intellectual disabilities to avoid dropout and further improve

effectiveness. Further research is necessary to understand the key components of lifestyle change interventions

for people with intellectual disabilities as well as their effect on lifestyle changes.

4.4 | Conclusion

Lifestyle change interventions for people with intellectual disabilities have a small, though, positive effect on

lifestyle, as demonstrated by meta- analyses on BMI, weight, and waist circumference, as well as by meta-

analyses on the constructs physical activity, body composition and physical capacity. However, the effects were

only statistically significant for waist circumference. Therefore, current lifestyle change interventions may not be

optimally tailored to meet the needs of people with intellectual disabilities. This review indicates that there are

still improvements to make in lifestyle change interventions to facilitate a healthier lifestyle of people with

intellectual disabilities.

138541-Willems_BNW.indd 38 31-10-19 10:07

38

4 | DISCUSSION


This systematic review aimed to examine the effectiveness of lifestyle change interventions for people with

intellectual disabilities. A small number of RCTs were identified and met the criteria for inclusion in the study. A

large number of outcome measures across all ICF categories were used but meta- analyses could only be

performed for a limited number of outcome measures. Lifestyle change interventions were found to lead to a

statistically significant decrease in waist circumference.

Studies mostly used well quantifiable outcome measures including “function” outcome measures such as weight

or 6- min walking distance. However, outcome measures from the ICF categories “environmental factors” and

“participation” were often neglected and personal outcome measures were mostly used by a single study. This

is surprising, because previous research found that environmental barriers, support from others and personal

motivation are relevant to healthy lifestyles for people with intellectual disabilities (Kuijken, Naaldenberg,

Nijhuis- van der Sanden, & Schrojenstein- Lantman de Valk, 2016; Van Schijndel- Speet, Evenhuis, Van Wijck, &

Echteld, 2014; Van Schijndel- Speet, Evenhuis, Van Wijck, Van Empelen et al., 2014). In addition, persons with

intellectual disabilities experience a healthy lifestyle as more than just functional and do relate more personal,

environmental and participation factors to a healthy lifestyle (Kuijken et al., 2016). For future research,

researchers may consider the use of suitable lifestyle outcome measures, which also target environmental and

personal factors as well as participation. Also, the research field could benefit from consensus about important

outcome measures on all ICF categories of healthy living.

Data on change in mean and standard deviations were missing for some studies, which made it necessary to use

a correlation coefficient for the within- group standard deviations for the constructs body composition and

physical capacity. However, we only found borderline significant effects on the construct of body composition

and no significant effects on the construct of physical capacity. Using this seemingly large correlation coefficient

indicates that further research is necessary to determine whether and how lifestyle change interventions can be

effective in improving body composition and physical capacity. For future research, it is important to report all

relevant data in papers to enable comparison.

Our meta- analysis found some evidence supporting the effectiveness of lifestyle change interventions for people

with intellectual disabilities. A significant decrease was found for waist circumference and borderline significant

effects were found at the construct level for physical activity and body composition. The analysis suggests that

the findings from the included studies may have been influenced by several methodological problems, such as

small sample size, short intervention duration, lack of follow- up and loss of participants during the intervention

resulting in incomplete outcome data. No moderators could be detected that could provide insight into

differences in effects across studies. These tentative results may indicate that the current lifestyle change

interventions are not optimally adapted for people with intellectual disabilities. This is in line with a previous

review which found that carer led health promotion interventions for people with intellectual disabilities were

either ineffective or insufficiently tailored to the needs of people with intellectual disabilities (Hithersay et al.,

39

2014). An explanation for the effectiveness of the interventions on waist circumference might be that this

outcome measure is more sensitive than the other outcome measures used. Previous research in the general

population recommends the use of more specific measures of adiposity than BMI, such as waist circumference,

as the former does not distinguish body composition (Burkhauser & Cawley, 2008). For future research, it is

important to use outcome measures appropriate for people with intellectual disabilities. Also, future research

could benefit from tailoring lifestyle change interventions specifically to people with intellectual disabilities.


This review and meta- analysis aimed to give more insight into the effects of lifestyle change interventions for

people with intellectual disabilities. A strength of this review was the systematic way in which the search and the

data extraction were performed, as well as the inclusion of RCTs. This rigorous method increased the reliability

of our findings and led to new insights in the effectiveness of lifestyle change interventions for people with

intellectual disabilities. Another strength was the use of meta- analysis, which has not been conducted previously

in the field of lifestyle change interventions for people with intellectual disabilities. As only RCTs were included,

the number of investigated lifestyle change interventions for people with intellectual disabilities was somewhat

limited. However, this inclusion criterion was necessary to conduct a reliable meta- analysis. Because of the small

number of RCTs for lifestyle change interventions, some caution is necessary with respect to the interpretation

of the current findings.


As the field of lifestyle change for people with intellectual disabilities is still young, our findings provide some

guidance for future research to improve the lifestyle of people with intellectual disabilities. The field of lifestyle

change for people with intellectual disabilities could benefit from interventions with a stronger methodological

design as mentioned earlier, for example using a tailored behaviour change theory- based design and the use of

suitable, sensitive outcome measures. Furthermore, it is important to determine in which way lifestyle change

interventions can be adapted for people with intellectual disabilities to avoid dropout and further improve

effectiveness. Further research is necessary to understand the key components of lifestyle change interventions

for people with intellectual disabilities as well as their effect on lifestyle changes.

4.4 | Conclusion

Lifestyle change interventions for people with intellectual disabilities have a small, though, positive effect on

lifestyle, as demonstrated by meta- analyses on BMI, weight, and waist circumference, as well as by meta-

analyses on the constructs physical activity, body composition and physical capacity. However, the effects were

only statistically significant for waist circumference. Therefore, current lifestyle change interventions may not be

optimally tailored to meet the needs of people with intellectual disabilities. This review indicates that there are

still improvements to make in lifestyle change interventions to facilitate a healthier lifestyle of people with


138541-Willems_BNW.indd 39 31-10-19 10:07

40

ACKNOWLEDGMENTS

The authors thank Wichor Bramer, the information specialist of the Erasmus MC University Medical Center

Rotterdam, for his support with the design and execution of the literature search.

COMPETING INTERESTS

The authors declare that they have no competing interests.

41

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41

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42

related co-morbidities or additional risk factors for co- morbidities: A systematic review. Health

Psychology Review, 6(1), 7–32. https://doi.org/10.1080/17437199.2010.513298

Dusseldorp, E., Van Genugten, L., Van Buuren, S., Verheijden, M. W., & Van Empelen, P. (2014). Combinations of

techniques that effectively change health behavior: Evidence from Meta CART analysis. Health

Psychology, 33(12), 1530. https://doi.org/10.1037/hea0000018

Fjeldsoe, B., Neuhaus, M., Winkler, E., & Eakin, E. (2011). Systematic review of maintenance of behavior change

following physical activity and dietary interventions. Health Psychology, 30(1), 99.

Foster, C., Hillsdon, M., Thorogood, M., Kaur, A., & Wedatilake, T. (2005). Interventions for promoting physical

activity. Cochrane Database of Systematic Reviews, https://doi.org/10.1002/14651858.CD003180. pub2




https://doi.org/10.1186/1471-2458-11-119


interventions: What is working for people with intellectual disabilities? Intellectual and Developmental

Disabilities, 49(1), 26–36. https://doi.org/10.1352/1934-9556-49.1.26

Higgins, J. P. T., Altman, D. G., Gøtzsche, P. C., Jüni, P., Moher, D., Oxman, A. D., … Sterne, J. A. C. (2011). The

Cochrane Collaboration’s tool for assessing risk of bias in randomised trials. BMJ: British Medical Journal,

343, d5928. https://doi.org/10.1136/bmj.d5928





with intellectual disabilities. Research in Developmental Disabilities, 32(5), 1977–1987.


Hithersay, R., Strydom, A., Moulster, G., & Buszewicz, M. (2014). Carer- led health interventions to monitor,

promote and improve the health of adults with intellectual disabilities in the community: A systematic

review. Research in Developmental Disabilities, 35(4), 887–907.


Jinks, A., Cotton, A., & Rylance, R. (2011). Obesity interventions for people with a learning disability: An

integrative literature review. Journal of Advanced Nursing, 67(3), 460–471.

https://doi. org/10.1111/j.1365-2648.2010.05508.x

43







Developmental Disabilities, 35(8), 1914–1926. https://doi. org/10.1016/j.ridd.2014.04.014

* Marks, B., Sisirak, J., & Chang, Y. C. (2013). Efficacy of the health matters program train- the trainer model.

Journal of Applied Research in Intellectual Disabilities, 26(4), 319–334.

https://doi.org/10.1111/jar.12045

* McDermott, S., Whitner, W., Thomas-Koger, M., Mann, J. R., Clarkson, J., Barnes, T. L., . . . Meriwether, R. A.

(2012). An efficacy trial of ‘steps to your health’, a health promotion programme for adults with

intellectual disability. Health Education Journal, 71(3), 278–290.

https://doi.org/10.1177/0017896912441240



https://doi. org/10.1111/j.1467-789X.2006.00296.x

* Melville, C. A., Mitchell, F., Stalker, K., Matthews, L., McConnachie, A., Murray, H. M., . . . Mutrie, N. (2015).

Effectiveness of a walking programme to support adults with intellectual disabilities to increase physical

activity: Walk well cluster- randomised controlled trial. International Journal of Behavioral Nutrition and

Physical Activity, 12(1), 1–11.

Melville, C. A., Oppewal, A., Elinder, L. S., Freiberger, E., Guerra-Balic, M., Hilgenkamp, T. I. M., . . . Giné-Garriga,

M. (2017). Definitions, measurement and prevalence of sedentary behaviour in adults with intellectual

disabilities—A systematic review. Preventive Medicine, 97, 62–71.

https://doi.org/10.1016/j.ypmed.2016.12.052


and physical activity interventions: A meta- regression. Health Psychology, 28(6), 690.

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meta- analyses: The PRISMA statement. Annals of Internal Medicine, 151(264–269), W64.



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44

Ogilvie, D., Foster, C. E., Rothnie, H., Cavill, N., Hamilton, V., Fitzsimons, C. F., & Mutrie, N. (2007). Interventions

to promote walking: Systematic review. British Medical Journal, 334(7605), 1204.

https:// doi.org/10.1136/bmj.39198.722720.BE

Öhman, H., Savikko, N., Strandberg, T. E., & Pitkälä, K. H. (2014). Effect of physical exercise on cognitive

performance in older adults with mild cognitive impairment or dementia: A systematic review. Dementia

and Geriatric Cognitive Disorders, 38(5–6), 347–365.

Patja, K., Iivanainen, M., Vesala, H., Oksanen, H., & Ruoppila, I. (2000). Life expectancy of people with intellectual

disability: A 35- year follow- up study. Journal of Intellectual Disability Research, 44(5), 591–599.

https://doi.org/10.1046/j.1365-2788.2000.00280.x



https://doi.org/10.1016/j. ypmed.2008.01.007

Pett, M., Clark, L., Eldredge, A., Cardell, B., Jordan, K., Chambless, C., & Burley, J. (2013). Effecting healthy lifestyle



https://doi.org/10.1352/1944-7558-118.3.224

R Core Team (2017). R: A language and environment for statistical computing. Vienna, Austria: R Foundation for

Statistical Computing. https://www.R-project.org/

* Shields, N., & Taylor, N. F. (2015). The feasibility of a physical activity program for young adults with Down


40(2), 115–125. https://doi.org/10.3109/13668250.2015.1014027


disabilities and obesity: A systematic review of the evidence. Nutrition Journal, 12(1), 132.



in Clinical Practice, 20(4), 401–407. https://doi. org/10.1111/jep.12145

* Van Schijndel-Speet, M., Evenhuis, H. M., Van Wijck, R., Montfort, K. C. A. G. M., & Echteld, M. A. (2016). A




Van Schijndel-Speet, M., Evenhuis, H. M., Van Wijck, R., Van Empelen, P., & Echteld, M. A. (2014). Facilitators and

barriers to physical activity as perceived by older adults with intellectual disability. Mental Retardation,

52(3), 175–186.

45






techniques in lifestyle change interventions for people with intellectual disabilities: A systematic review.

Research in Developmental Disabilities, 60, 256–268. https://doi. org/10.1016/j.ridd.2016.10.008



Yamaki, K. (2005). Body weight status among adults with intellectual disability in the community. Mental

Retardation, 43(1), 1–10. https://doi. org/10.1352/0047-6765(2005)43<1:BWSAAW>2.0.CO;2

138541-Willems_BNW.indd 45 31-10-19 10:07

46

APPENDICES

APPENDIX 1 – Search string for database searches

Embase.com 449 438

Medline (OvidSP) 973 772

Web of science 411 208

Cochrane 229 43

PubMed publisher 27 21

PsycINFO (OvidSP) 631 431

Cinahl (ebsco) 533 375

Google scholar 100 82

Total 3352 2370

Embase.com

('mental deficiency'/exp OR 'intellectual impairment'/de OR (((mental* OR intellect*) NEXT/1 (deficien* OR handicap* OR

disab* OR retard* OR impair* OR challenged)) OR (developmental NEXT/1 (disabilit* OR handicap* OR deficien*)) OR (Down*

NEXT/1 syndrome*) OR 'prader willi'):ab,ti) AND ('lifestyle modification'/exp OR 'diet therapy'/de OR 'diet restriction'/exp OR

'low calory diet'/exp OR 'low carbohydrate diet'/exp OR 'low fat diet'/exp OR 'weight control'/exp OR 'weight reduction'/exp

OR 'dietary intake'/de OR lifestyle/exp OR 'sedentary lifestyle'/exp OR 'body mass'/exp OR 'physical activity'/exp OR

exercise/exp OR kinesiotherapy/exp OR 'treadmill exercise'/exp OR obesity/exp OR (((lifestyle* OR life-style OR calor* OR

nutrition* OR diet*) NEAR/3 (rehab* OR modif* OR program* OR restrict* OR therap* OR treat*)) OR (low NEXT/1 (calor*

OR carb* OR fat)) OR (weight NEAR/3 (loss OR losing OR reduction OR control*)) OR 'body mass' OR bmi OR lifestyle OR life-

style OR obes* OR overweight* OR (physical* NEAR/3 activ*) OR exercise OR kinesiotherap* OR kinesitherap* OR swimming

OR walking OR jogging OR running OR cycling OR treadmill OR ((diet* OR nutrient*) NEAR/3 intake*)):ab,ti) AND ((random*

OR factorial* OR crossover* OR (cross NEXT/1 over*) OR placebo* OR ((doubl* OR singl*) NEXT/1 blind*) OR assign* OR

allocat* OR volunteer*):ab,ti OR 'crossover procedure'/de OR 'double-blind procedure'/de OR 'randomized controlled

trial'/de OR 'single-blind procedure'/de) NOT ([Conference Abstract]/lim OR [Letter]/lim OR [Note]/lim OR [Conference

Paper]/lim OR [Editorial]/lim) AND [english]/lim NOT ([animals]/lim NOT [humans]/lim)

Medline (OvidSP)

(exp Intellectual Disability/ OR Mentally Disabled Persons/ OR (((mental* OR intellect*) ADJ (deficien* OR handicap* OR

disab* OR retard* OR impair* OR challenged)) OR (developmental ADJ (disabilit* OR handicap* OR deficien*)) OR (Down*

ADJ syndrome*) OR "prader willi").ab,ti.) AND (diet therapy/ OR diet therapy.xs. OR Caloric Restriction/ OR "Diet, Reducing"/

OR "Diet, Carbohydrate-Restricted"/ OR "Diet, Fat-Restricted"/ OR Weight Loss/ OR Weight Reduction Programs/ OR

(((lifestyle* OR life-style OR calor* OR nutrition* OR diet*) ADJ3 (rehab* OR modif* OR program* OR restrict* OR therap* OR

treat*)) OR (low ADJ (calor* OR carb* OR fat)) OR (weight ADJ3 (loss OR losing OR reduction OR control*)) OR "body mass"

OR bmi OR lifestyle OR life-style OR obes* OR overweight* OR (physical* ADJ3 activ*) OR exercise OR kinesiotherap* OR

kinesitherap* OR swimming OR walking OR jogging OR running OR cycling OR treadmill OR ((diet* OR nutrient*) ADJ3

intake*)).ab,ti.) AND (Clinical Trial.pt. OR randomized.ab,ti. OR placebo.ab,ti. OR dt.fs. OR randomly.ab,ti. OR trial.ab,ti. OR

groups.ab,ti.) NOT (letter OR news OR comment OR editorial OR congresses OR abstracts).pt. AND english.la. NOT (exp

animals/ NOT humans/)

47

Cochrane

((((mental* OR intellect*) NEXT/1 (deficien* OR handicap* OR disab* OR retard* OR impair* OR challenged)) OR

(developmental NEXT/1 (disabilit* OR handicap* OR deficien*)) OR (Down* NEXT/1 syndrome*) OR 'prader willi'):ab,ti) AND

((((lifestyle* OR life-style OR calor* OR nutrition* OR diet*) NEAR/3 (rehab* OR modif* OR program* OR restrict* OR therap*

OR treat*)) OR (low NEXT/1 (calor* OR carb* OR fat)) OR (weight NEAR/3 (loss OR losing OR reduction OR control*)) OR 'body

mass' OR bmi OR lifestyle OR life-style OR obes* OR overweight* OR (physical* NEAR/3 activ*) OR exercise OR

kinesiotherap* OR kinesitherap* OR swimming OR walking OR jogging OR running OR cycling OR treadmill OR ((diet* OR

nutrient*) NEAR/3 intake*)):ab,ti)

Web of science

TS=(((((mental* OR intellect*) NEAR/1 (deficien* OR handicap* OR disab* OR retard* OR impair* OR challenged)) OR

(developmental NEAR/1 (disabilit* OR handicap* OR deficien*)) OR (Down* NEAR/1 syndrome*) OR "prader willi")) AND


OR treat*)) OR (low NEAR/1 (calor* OR carb* OR fat)) OR (weight NEAR/2 (loss OR losing OR reduction OR control*)) OR "body

mass" OR bmi OR lifestyle OR life-style OR obes* OR overweight* OR (physical* NEAR/2 activ*) OR exercise OR


nutrient*) NEAR/2 intake*))) AND ((random* OR factorial* OR crossover* OR (cross NEAR/1 over*) OR placebo* OR ((doubl*

OR singl*) NEAR/1 blind*) OR assign* OR allocat* ORvolunteer*)) NOT ((animal* OR rat OR rats OR mouse OR mice OR murine

OR pig OR swine OR porcine) NOT (human* OR patient* OR person*))) AND DT=(article)

PubMed publisher

("Intellectual Disability"[mh] OR "Mentally Disabled Persons"[mh] OR (mental deficien*[tiab] OR mental handicap*[tiab] OR

mental disab*[tiab] OR mental retard*[tiab] OR mental impair*[tiab] OR mental challeng*[tiab] OR mentally deficien*[tiab]

OR mentally handicap*[tiab] OR mentally disab*[tiab] OR mentally retard*[tiab] OR mentally impair*[tiab] OR mentally

challeng*[tiab] OR intellectual deficien*[tiab] OR intellectual handicap*[tiab] OR intellectual disab*[tiab] OR intellectual

retard*[tiab] OR intellectual impair*[tiab] OR intellectual challeng*[tiab] OR intellectually deficien*[tiab] OR intellectually

handicap*[tiab] OR intellectually disab*[tiab] OR intellectually retard*[tiab] OR intellectually impair*[tiab] OR intellectually

challeng*[tiab] OR developmental disabilit*[tiab] OR developmental handicap*[tiab] OR developmental deficien*[tiab] OR

Down syndrome*[tiab] OR "prader willi")) AND (diet therapy[mh] OR diet therapy[sh] OR Caloric Restriction[mh] OR "Diet,

Reducing"[mh] OR "Diet, Carbohydrate-Restricted"[mh] OR "Diet, Fat-Restricted"[mh] OR Weight Loss[mh] OR Weight

Reduction Programs[mh] OR (((lifestyle*[tiab] OR life-style OR calor*[tiab] OR nutrition*[tiab] OR diet*[tiab]) AND

(rehab*[tiab] OR modif*[tiab] OR program*[tiab] OR restrict*[tiab] OR therap*[tiab] OR treat*[tiab])) OR (low ADJ

(calor*[tiab] OR carb*[tiab] OR fat)) OR (weight AND (loss OR losing OR reduction OR control*[tiab])) OR "body mass" OR bmi

OR lifestyle OR life-style OR obes*[tiab] OR overweight*[tiab] OR (physical*[tiab] AND activ*[tiab]) OR exercise OR

kinesiotherap*[tiab] OR kinesitherap*[tiab] OR swimming OR walking OR jogging OR running OR cycling OR treadmill OR

((diet*[tiab] OR nutrient*[tiab]) AND intake*[tiab]))) AND (Clinical Trial[pt] OR randomized OR placebo OR drug therapy[sh]

OR randomly OR trial OR groups) NOT (letter[pt] OR news[pt] OR comment[pt] OR editorial[pt] OR congresses[pt] OR

abstracts[pt]) AND english[la] NOT (animals[mh] NOT humans[mh]) AND publisher[sb]

PsycINFO (OvidSP)

(exp Intellectual Development Disorder/ OR Cognitive Impairment/ OR (((mental* OR intellect*) ADJ (deficien* OR handicap*

OR disab* OR retard* OR impair* OR challenged)) OR (developmental ADJ (disabilit* OR handicap* OR deficien*)) OR (Down*

ADJ syndrome*) OR "prader willi").ab,ti.) AND (Weight Control/ OR Dietary Restraint/ OR Weight Loss/ OR Lifestyle Changes/

138541-Willems_BNW.indd 46 31-10-19 10:07

46

APPENDICES


Embase.com 449 438

Medline (OvidSP) 973 772

Web of science 411 208

Cochrane 229 43

PubMed publisher 27 21

PsycINFO (OvidSP) 631 431

Cinahl (ebsco) 533 375

Google scholar 100 82

Total 3352 2370

Embase.com



NEXT/1 syndrome*) OR 'prader willi'):ab,ti) AND ('lifestyle modification'/exp OR 'diet therapy'/de OR 'diet restriction'/exp OR

'low calory diet'/exp OR 'low carbohydrate diet'/exp OR 'low fat diet'/exp OR 'weight control'/exp OR 'weight reduction'/exp

OR 'dietary intake'/de OR lifestyle/exp OR 'sedentary lifestyle'/exp OR 'body mass'/exp OR 'physical activity'/exp OR

exercise/exp OR kinesiotherapy/exp OR 'treadmill exercise'/exp OR obesity/exp OR (((lifestyle* OR life-style OR calor* OR

nutrition* OR diet*) NEAR/3 (rehab* OR modif* OR program* OR restrict* OR therap* OR treat*)) OR (low NEXT/1 (calor*

OR carb* OR fat)) OR (weight NEAR/3 (loss OR losing OR reduction OR control*)) OR 'body mass' OR bmi OR lifestyle OR life-

style OR obes* OR overweight* OR (physical* NEAR/3 activ*) OR exercise OR kinesiotherap* OR kinesitherap* OR swimming

OR walking OR jogging OR running OR cycling OR treadmill OR ((diet* OR nutrient*) NEAR/3 intake*)):ab,ti) AND ((random*

OR factorial* OR crossover* OR (cross NEXT/1 over*) OR placebo* OR ((doubl* OR singl*) NEXT/1 blind*) OR assign* OR

allocat* OR volunteer*):ab,ti OR 'crossover procedure'/de OR 'double-blind procedure'/de OR 'randomized controlled

trial'/de OR 'single-blind procedure'/de) NOT ([Conference Abstract]/lim OR [Letter]/lim OR [Note]/lim OR [Conference

Paper]/lim OR [Editorial]/lim) AND [english]/lim NOT ([animals]/lim NOT [humans]/lim)

Medline (OvidSP)



ADJ syndrome*) OR "prader willi").ab,ti.) AND (diet therapy/ OR diet therapy.xs. OR Caloric Restriction/ OR "Diet, Reducing"/



treat*)) OR (low ADJ (calor* OR carb* OR fat)) OR (weight ADJ3 (loss OR losing OR reduction OR control*)) OR "body mass"

OR bmi OR lifestyle OR life-style OR obes* OR overweight* OR (physical* ADJ3 activ*) OR exercise OR kinesiotherap* OR

kinesitherap* OR swimming OR walking OR jogging OR running OR cycling OR treadmill OR ((diet* OR nutrient*) ADJ3

intake*)).ab,ti.) AND (Clinical Trial.pt. OR randomized.ab,ti. OR placebo.ab,ti. OR dt.fs. OR randomly.ab,ti. OR trial.ab,ti. OR

groups.ab,ti.) NOT (letter OR news OR comment OR editorial OR congresses OR abstracts).pt. AND english.la. NOT (exp

animals/ NOT humans/)

47

Cochrane




OR treat*)) OR (low NEXT/1 (calor* OR carb* OR fat)) OR (weight NEAR/3 (loss OR losing OR reduction OR control*)) OR 'body

mass' OR bmi OR lifestyle OR life-style OR obes* OR overweight* OR (physical* NEAR/3 activ*) OR exercise OR


nutrient*) NEAR/3 intake*)):ab,ti)

Web of science




OR treat*)) OR (low NEAR/1 (calor* OR carb* OR fat)) OR (weight NEAR/2 (loss OR losing OR reduction OR control*)) OR "body

mass" OR bmi OR lifestyle OR life-style OR obes* OR overweight* OR (physical* NEAR/2 activ*) OR exercise OR


nutrient*) NEAR/2 intake*))) AND ((random* OR factorial* OR crossover* OR (cross NEAR/1 over*) OR placebo* OR ((doubl*

OR singl*) NEAR/1 blind*) OR assign* OR allocat* ORvolunteer*)) NOT ((animal* OR rat OR rats OR mouse OR mice OR murine

OR pig OR swine OR porcine) NOT (human* OR patient* OR person*))) AND DT=(article)

PubMed publisher

("Intellectual Disability"[mh] OR "Mentally Disabled Persons"[mh] OR (mental deficien*[tiab] OR mental handicap*[tiab] OR

mental disab*[tiab] OR mental retard*[tiab] OR mental impair*[tiab] OR mental challeng*[tiab] OR mentally deficien*[tiab]


challeng*[tiab] OR intellectual deficien*[tiab] OR intellectual handicap*[tiab] OR intellectual disab*[tiab] OR intellectual

retard*[tiab] OR intellectual impair*[tiab] OR intellectual challeng*[tiab] OR intellectually deficien*[tiab] OR intellectually


challeng*[tiab] OR developmental disabilit*[tiab] OR developmental handicap*[tiab] OR developmental deficien*[tiab] OR

Down syndrome*[tiab] OR "prader willi")) AND (diet therapy[mh] OR diet therapy[sh] OR Caloric Restriction[mh] OR "Diet,

Reducing"[mh] OR "Diet, Carbohydrate-Restricted"[mh] OR "Diet, Fat-Restricted"[mh] OR Weight Loss[mh] OR Weight


(rehab*[tiab] OR modif*[tiab] OR program*[tiab] OR restrict*[tiab] OR therap*[tiab] OR treat*[tiab])) OR (low ADJ

(calor*[tiab] OR carb*[tiab] OR fat)) OR (weight AND (loss OR losing OR reduction OR control*[tiab])) OR "body mass" OR bmi

OR lifestyle OR life-style OR obes*[tiab] OR overweight*[tiab] OR (physical*[tiab] AND activ*[tiab]) OR exercise OR

kinesiotherap*[tiab] OR kinesitherap*[tiab] OR swimming OR walking OR jogging OR running OR cycling OR treadmill OR

((diet*[tiab] OR nutrient*[tiab]) AND intake*[tiab]))) AND (Clinical Trial[pt] OR randomized OR placebo OR drug therapy[sh]

OR randomly OR trial OR groups) NOT (letter[pt] OR news[pt] OR comment[pt] OR editorial[pt] OR congresses[pt] OR

abstracts[pt]) AND english[la] NOT (animals[mh] NOT humans[mh]) AND publisher[sb]

PsycINFO (OvidSP)



ADJ syndrome*) OR "prader willi").ab,ti.) AND (Weight Control/ OR Dietary Restraint/ OR Weight Loss/ OR Lifestyle Changes/

138541-Willems_BNW.indd 47 31-10-19 10:07

48

OR diets/ OR lifestyle/ OR body mass index/ OR exp exercise/ OR exp Overweight/ OR (((lifestyle* OR life-style OR calor* OR

nutrition* OR diet*) ADJ3 (rehab* OR modif* OR program* OR restrict* OR therap* OR treat*)) OR (low ADJ (calor* OR carb*

OR fat)) OR (weight ADJ3 (loss OR losing OR reduction OR control*)) OR "body mass" OR bmi OR lifestyle OR life-style OR

obes* OR overweight* OR (physical* ADJ3 activ*) OR exercise OR kinesiotherap* OR kinesitherap* OR swimming OR walking

OR jogging OR running OR cycling OR treadmill OR ((diet* OR nutrient*) ADJ3 intake*)).ab,ti.) AND (Clinical Trial.pt. OR

randomized.ab,ti. OR placebo.ab,ti. OR randomly.ab,ti. OR trial.ab,ti. OR groups.ab,ti.) NOT (letter OR news OR comment OR

editorial OR congresses OR abstracts).pt. AND english.la. NOT (exp animals/ NOT humans/)

Cinahl (ebsco)

(MH "Intellectual Disability+" OR MH "Mentally Disabled Persons+" OR(((mental* OR intellect*) N1 (deficien* OR handicap*

OR disab* OR retard* OR impair* OR challenged)) OR (developmental N1 (disabilit* OR handicap* OR deficien*)) OR (Down*

N1 syndrome*) OR "prader willi")) AND (MH "diet therapy" OR MH "Restricted Diet+" OR MH "Diet, Fat-Restricted+" OR MH

"Weight Loss+" OR MH "Weight Reduction Programs+" OR MH "life style+" OR MH "body mass index+" OR MH exercise+ OR

MH "Therapeutic Exercise+" OR MH obesity+ OR (((lifestyle* OR life-style OR calor* OR nutrition* OR diet*) N2 (rehab* OR

modif* OR program* OR restrict* OR therap* OR treat*)) OR (low N1 (calor* OR carb* OR fat)) OR (weight N2 (loss OR losing

OR reduction OR control*)) OR "body mass" OR bmi OR lifestyle OR life-style OR obes* OR overweight* OR (physical* N2

activ*) OR exercise OR kinesiotherap* OR kinesitherap* OR swimming OR walking OR jogging OR running OR cycling OR

treadmill OR ((diet* OR nutrient*) N2 intake*))) AND (PT (Clinical Trial) OR randomized OR placebo OR randomly OR trial OR

groups) NOT PT (letter OR news OR comment OR editorial OR congresses OR abstracts) AND LA english NOT (MH animals+

NOT humans+)

Google scholar

"mental|mentally|intellectual|intellectually deficiency|deficient|handicap|handicapped|disabled|impaired|

retarded|retardation" lifestyle|"life style"|caloric|diet|"weight loss|reduction"|bmi|obesity|overweight

trial|random|randomized|randomization|rct

SUPPLEMENTAL FIGURE 1 | FOREST PLOT FOR WAIST CIRCUMFERENCE

49

SUPPLEMENTAL FIGURE 2 | FOREST PLOT FOR BMI

SUPPLEMENTAL FIGURE 3 | FOREST PLOT FOR WEIGHT

SUPPLEMENTAL FIGURE 4 | FOREST PLOT FOR PHYSICAL ACTIVITY

SUPPLEMENTAL FIGURE 5 | FOREST PLOT FOR BODY COMPOSITION

138541-Willems_BNW.indd 48 31-10-19 10:07

48

OR diets/ OR lifestyle/ OR body mass index/ OR exp exercise/ OR exp Overweight/ OR (((lifestyle* OR life-style OR calor* OR

nutrition* OR diet*) ADJ3 (rehab* OR modif* OR program* OR restrict* OR therap* OR treat*)) OR (low ADJ (calor* OR carb*

OR fat)) OR (weight ADJ3 (loss OR losing OR reduction OR control*)) OR "body mass" OR bmi OR lifestyle OR life-style OR

obes* OR overweight* OR (physical* ADJ3 activ*) OR exercise OR kinesiotherap* OR kinesitherap* OR swimming OR walking

OR jogging OR running OR cycling OR treadmill OR ((diet* OR nutrient*) ADJ3 intake*)).ab,ti.) AND (Clinical Trial.pt. OR

randomized.ab,ti. OR placebo.ab,ti. OR randomly.ab,ti. OR trial.ab,ti. OR groups.ab,ti.) NOT (letter OR news OR comment OR

editorial OR congresses OR abstracts).pt. AND english.la. NOT (exp animals/ NOT humans/)

Cinahl (ebsco)

(MH "Intellectual Disability+" OR MH "Mentally Disabled Persons+" OR(((mental* OR intellect*) N1 (deficien* OR handicap*

OR disab* OR retard* OR impair* OR challenged)) OR (developmental N1 (disabilit* OR handicap* OR deficien*)) OR (Down*

N1 syndrome*) OR "prader willi")) AND (MH "diet therapy" OR MH "Restricted Diet+" OR MH "Diet, Fat-Restricted+" OR MH

"Weight Loss+" OR MH "Weight Reduction Programs+" OR MH "life style+" OR MH "body mass index+" OR MH exercise+ OR

MH "Therapeutic Exercise+" OR MH obesity+ OR (((lifestyle* OR life-style OR calor* OR nutrition* OR diet*) N2 (rehab* OR

modif* OR program* OR restrict* OR therap* OR treat*)) OR (low N1 (calor* OR carb* OR fat)) OR (weight N2 (loss OR losing

OR reduction OR control*)) OR "body mass" OR bmi OR lifestyle OR life-style OR obes* OR overweight* OR (physical* N2

activ*) OR exercise OR kinesiotherap* OR kinesitherap* OR swimming OR walking OR jogging OR running OR cycling OR

treadmill OR ((diet* OR nutrient*) N2 intake*))) AND (PT (Clinical Trial) OR randomized OR placebo OR randomly OR trial OR

groups) NOT PT (letter OR news OR comment OR editorial OR congresses OR abstracts) AND LA english NOT (MH animals+

NOT humans+)

Google scholar

"mental|mentally|intellectual|intellectually deficiency|deficient|handicap|handicapped|disabled|impaired|

retarded|retardation" lifestyle|"life style"|caloric|diet|"weight loss|reduction"|bmi|obesity|overweight

trial|random|randomized|randomization|rct

SUPPLEMENTAL FIGURE 1 | FOREST PLOT FOR WAIST CIRCUMFERENCE

49

SUPPLEMENTAL FIGURE 2 | FOREST PLOT FOR BMI

SUPPLEMENTAL FIGURE 3 | FOREST PLOT FOR WEIGHT

SUPPLEMENTAL FIGURE 4 | FOREST PLOT FOR PHYSICAL ACTIVITY

SUPPLEMENTAL FIGURE 5 | FOREST PLOT FOR BODY COMPOSITION

138541-Willems_BNW.indd 49 31-10-19 10:07

50

SUPPLEMENTAL FIGURE 6 | FOREST PLOT FOR PHYSICAL CAPACITY

SUPPLEMENTAL TABLE 1 | OVERVIEW OF OUTCOME MEASURES USED

Activity Participation Functions Personal factors Environmental factors

Daily physical activity (PA) (5)* Number of steps per day N=3 Moderate-vigorous PA N=3 Total PA (Self-report) N=2 Physical activity counts N=1 Sedentary behaviour N=1 Metabolic equivalents N=1

Activities of daily living (ADL) (1) ADL; Barthel index N=1 Instrumental ADL; Lawton scale N=1

Body composition (8) Waist circumference N=5 Weight N=5 Body Mass Index (BMI) N=4 Hip circumference N=1 Fat mass N=2 Height N=1

Quality of life (4) Satisfaction with life N=2 Quality of life (EQ-5D1) N=1 Life stress N=1

Social/environmental supports (SESE) (1) SESE for exercise N=1 SESE for nutrition N=1

Food intake/Nutrition (2) Vegetable consumption N=2 Food diversity N=1 Food and meals N=1 No lunches complying with the plate model N=1 No dinners complying with the plate model

Cardiovascular risk factors (3) Glucose N=3 Cholesterol N=3 Diabolic blood pressure N=2 Systolic blood pressure N=2

Psychological functioning (3) Self-efficacy N=2 Cognitive functioning (DMR2) N=1 Depressive symptoms (SDL-ID3) N=1

Work routine (1) Work routine N=1

1 EQ-5D; European Quality of Life, 5 dimensions 2 DMR; Dementia questionnaire for persons with Mental Retardation 3 SDL-ID; Signalizing Depression List for people with Intellectual Disabilities

51

N=1 Fruit servings N=1 Treats, kcal/day N=1

Physical capacity (5) 6-Minute walking distance N=3 Time get-up-and-go N=2 Sit-to-stand N=2 Self-selected walking speed N=2 Fast walking speed N=2 Hand Grip Strength N=1 Time to exhaustion N=1 Exercise outcomes N=1 Motor fitness strength N=1 Balance (BBS4) N=1 Aerobic Performance (ISWT5) N=1 Ventilatory Threshold N=1 Relative peak oxygen consumption N=1 Peak oxygen consumption N=1 Peak heart rate N=1

Perceived health (3) Perceived general health N=2 Perceived health behaviour N=1 Subjective vitality N=1

Flexibility Shoulder flexibility N=1 Sit-and-reach N=1

Health literacy (1)

4 BBS; Berg Balance Test 5 ISWT; Incremental Shuttle Walking Test

138541-Willems_BNW.indd 50 31-10-19 10:07

50

SUPPLEMENTAL FIGURE 6 | FOREST PLOT FOR PHYSICAL CAPACITY

SUPPLEMENTAL TABLE 1 | OVERVIEW OF OUTCOME MEASURES USED

Activity Participation Functions Personal factors Environmental factors

Daily physical activity (PA) (5)* Number of steps per day N=3 Moderate-vigorous PA N=3 Total PA (Self-report) N=2 Physical activity counts N=1 Sedentary behaviour N=1 Metabolic equivalents N=1

Activities of daily living (ADL) (1) ADL; Barthel index N=1 Instrumental ADL; Lawton scale N=1

Body composition (8) Waist circumference N=5 Weight N=5 Body Mass Index (BMI) N=4 Hip circumference N=1 Fat mass N=2 Height N=1

Quality of life (4) Satisfaction with life N=2 Quality of life (EQ-5D1) N=1 Life stress N=1

Social/environmental supports (SESE) (1) SESE for exercise N=1 SESE for nutrition N=1

Food intake/Nutrition (2) Vegetable consumption N=2 Food diversity N=1 Food and meals N=1 No lunches complying with the plate model N=1 No dinners complying with the plate model

Cardiovascular risk factors (3) Glucose N=3 Cholesterol N=3 Diabolic blood pressure N=2 Systolic blood pressure N=2

Psychological functioning (3) Self-efficacy N=2 Cognitive functioning (DMR2) N=1 Depressive symptoms (SDL-ID3) N=1

Work routine (1) Work routine N=1

1 EQ-5D; European Quality of Life, 5 dimensions 2 DMR; Dementia questionnaire for persons with Mental Retardation 3 SDL-ID; Signalizing Depression List for people with Intellectual Disabilities

51

N=1 Fruit servings N=1 Treats, kcal/day N=1

Physical capacity (5) 6-Minute walking distance N=3 Time get-up-and-go N=2 Sit-to-stand N=2 Self-selected walking speed N=2 Fast walking speed N=2 Hand Grip Strength N=1 Time to exhaustion N=1 Exercise outcomes N=1 Motor fitness strength N=1 Balance (BBS4) N=1 Aerobic Performance (ISWT5) N=1 Ventilatory Threshold N=1 Relative peak oxygen consumption N=1 Peak oxygen consumption N=1 Peak heart rate N=1

Perceived health (3) Perceived general health N=2 Perceived health behaviour N=1 Subjective vitality N=1

Flexibility Shoulder flexibility N=1 Sit-and-reach N=1

Health literacy (1)

4 BBS; Berg Balance Test 5 ISWT; Incremental Shuttle Walking Test

138541-Willems_BNW.indd 51 31-10-19 10:07

52

Mobility N=1 Nutrition (NAKS6) N=1 Weight (NAKS6) N=1 Total (NAKS6) N=1

* Bolded outcome measures are used in meta-analysis on construct level.

6 NAKS; Nutrition and Activity Knowledge Scale

138541-Willems_BNW.indd 52 31-10-19 10:07

52

Mobility N=1 Nutrition (NAKS6) N=1 Weight (NAKS6) N=1 Total (NAKS6) N=1

* Bolded outcome measures are used in meta-analysis on construct level.

6 NAKS; Nutrition and Activity Knowledge Scale

138541-Willems_BNW.indd 53 31-10-19 10:07

Chapter 3

Use of behaviour change techniques in lifestyle change interventions for

people with intellectual disabilities: A systematic review

Mariël Willems


Else Havik

Aly Waninge

Craig A. Melville

Research in Developmental Disabilities, 2017, 60, 256-268

138541-Willems_BNW.indd 54 31-10-19 10:07

Chapter 3

Use of behaviour change techniques in lifestyle change interventions for

people with intellectual disabilities: A systematic review

Mariël Willems


Else Havik

Aly Waninge

Craig A. Melville

Research in Developmental Disabilities, 2017, 60, 256-268

138541-Willems_BNW.indd 55 31-10-19 10:07

56

ABSTRACT

Background: People with intellectual disabilities (ID) experience more health problems and have different

lifestyle change needs, compared with the general population.

Aim: To improve lifestyle change interventions for people with ID, this review examined how behaviour change

techniques (BCTs) were applied in interventions aimed at physical activity, nutrition or physical activity and

nutrition, and described their quality.

Methods: After a broad search and detailed selection process, 45 studies were included in the review. For coding

BCTs, the CALO-RE taxonomy was used. To assess the quality of the interventions, the Physiotherapy Evidence

Database (PEDro) scale was used. Extracted data included general study characteristics and intervention

characteristics.

Results: All interventions used BCTs, although theory-driven BCTs were rarely used. The most frequently used

BCTs were ‘provide information on consequences of behaviour in general’ and ‘plan social support/social

change’. Most studies were of low quality and a theoretical framework was often missing.

Conclusion: This review shows that BCTs are frequently applied in lifestyle change interventions. To further

improve effectiveness, these lifestyle change interventions could benefit from using a theoretical framework, a

detailed intervention description and an appropriate and reliable intervention design which is tailored to people

with ID.

57

1 | INTRODUCTION

People with intellectual disabilities (ID) experience up to twice as many health problems as the general

population (Van Schrojenstein Lantman-De Valk & Walsh, 2008). They have very low physical activity levels

(Temple, Frey, & Stanish, 2006; Hilgenkamp, Reis, Van Wijck, & Evenhuis, 2012) and both obesity and overweight

are highly prevalent in this population (Melville, Hamilton, Hankey, Miller, & Boyle, 2007; Waninge et al., 2013).

Factors like low activity levels, use of medication causing weight gain and having Down syndrome (Hsieh, Rimmer,

& Heller, 2014) are associated with higher rates of obesity in people with ID (Peterson, Janz, & Lowe, 2008).

Physical inactivity, obesity and overweight cause serious health problems (WHO, 2009). Due to the health risks

associated with physical inactivity and obesity, research on the promotion of physical activity and healthy eating

habits for people with ID is necessary (Robertson et al., 2000).

Lifestyle change interventions, aimed at weight management in the general population, have found to be

effective in managing weight (Loveman et al., 2011). However, minimal evidence is available for the effectiveness

of lifestyle change interventions in ID populations (Brooker et al., 2015; Scott & Havercamp, 2016; Spanos et al.,

2013). People with ID have different health promotion needs, compared to the general population (Robertson

et al., 2000). They experience intrinsic barriers to a healthy lifestyle and lifestyle change as multimorbidity

(Hermans & Evenhuis, 2014) and barriers related to cognitive, behavioural and mobility impairments. In addition,

persons with ID face many external barriers such as financial barriers, physical limitations and policy guidelines

that limit health choices (Caton et al., 2012; Kuijken, Naaldenberg, Nijhuis-Van der Sande, & Van Schrojenstein-

Lantman de Valk, 2016; Messent, Cooke, & Long, 1999). As a contrast, the general population mostly experiences

barriers as intrinsic to the individual, according to theoretical models of the determinants of physical activity

(Robertson et al., 2000). Considering the cognitive impairments of people with ID and the barriers described

above, programme materials have to be changed to be accessible for people with ID (Elinder, Bergström,

Hagberg, Wihlman, & Hagströmer, 2010). Additionally, people with ID experience barriers to access lifestyle

change services (Van Schrojenstein Lantman-De Valk & Walsh, 2008).

To improve the effectiveness of lifestyle change interventions for people with ID, it is necessary to identify the

effective ingredients within interventions (Michie et al., 2011). However, reporting of intervention content in

published articles is heterogeneous with regards to the used descriptions (Naaldenberg, Kuijken, Van Dooren, &

Van Schrojenstein Lantman-De Valk, 2013) and is often undetailed (Michie, Fixen, Grimshaw, & Eccles, 2009). For

the general population, behaviour change techniques (BCTs) have been found to be an effective component of

interventions changing health behaviours (Bird et al., 2013; Greaves et al., 2011; Olander et al., 2013). Abraham

and Michie (2008) developed a 26-item taxonomy to categorize the BCTs. This taxonomy was later refined by

Michie et al. (2011). Multiple reviews have used these taxonomies to review the BCTs in lifestyle change

interventions for the general population (Dombrowski et al., 2012; Malik, Blake & Suggs, 2014; Olander et al.,

2013; Williams & French, 2011) and have informed the development of new interventions.

Although BCTs have been shown to be effective components of lifestyle change interventions for the general

population, it is unclear whether these BCTs can be used in the same way in interventions for people with ID (Van

138541-Willems_BNW.indd 56 31-10-19 10:07

56

ABSTRACT

Background: People with intellectual disabilities (ID) experience more health problems and have different

lifestyle change needs, compared with the general population.

Aim: To improve lifestyle change interventions for people with ID, this review examined how behaviour change

techniques (BCTs) were applied in interventions aimed at physical activity, nutrition or physical activity and

nutrition, and described their quality.

Methods: After a broad search and detailed selection process, 45 studies were included in the review. For coding

BCTs, the CALO-RE taxonomy was used. To assess the quality of the interventions, the Physiotherapy Evidence

Database (PEDro) scale was used. Extracted data included general study characteristics and intervention

characteristics.

Results: All interventions used BCTs, although theory-driven BCTs were rarely used. The most frequently used

BCTs were ‘provide information on consequences of behaviour in general’ and ‘plan social support/social

change’. Most studies were of low quality and a theoretical framework was often missing.

Conclusion: This review shows that BCTs are frequently applied in lifestyle change interventions. To further

improve effectiveness, these lifestyle change interventions could benefit from using a theoretical framework, a

detailed intervention description and an appropriate and reliable intervention design which is tailored to people

with ID.

57

1 | INTRODUCTION

People with intellectual disabilities (ID) experience up to twice as many health problems as the general

population (Van Schrojenstein Lantman-De Valk & Walsh, 2008). They have very low physical activity levels

(Temple, Frey, & Stanish, 2006; Hilgenkamp, Reis, Van Wijck, & Evenhuis, 2012) and both obesity and overweight

are highly prevalent in this population (Melville, Hamilton, Hankey, Miller, & Boyle, 2007; Waninge et al., 2013).

Factors like low activity levels, use of medication causing weight gain and having Down syndrome (Hsieh, Rimmer,

& Heller, 2014) are associated with higher rates of obesity in people with ID (Peterson, Janz, & Lowe, 2008).

Physical inactivity, obesity and overweight cause serious health problems (WHO, 2009). Due to the health risks

associated with physical inactivity and obesity, research on the promotion of physical activity and healthy eating

habits for people with ID is necessary (Robertson et al., 2000).

Lifestyle change interventions, aimed at weight management in the general population, have found to be

effective in managing weight (Loveman et al., 2011). However, minimal evidence is available for the effectiveness

of lifestyle change interventions in ID populations (Brooker et al., 2015; Scott & Havercamp, 2016; Spanos et al.,

2013). People with ID have different health promotion needs, compared to the general population (Robertson

et al., 2000). They experience intrinsic barriers to a healthy lifestyle and lifestyle change as multimorbidity

(Hermans & Evenhuis, 2014) and barriers related to cognitive, behavioural and mobility impairments. In addition,

persons with ID face many external barriers such as financial barriers, physical limitations and policy guidelines

that limit health choices (Caton et al., 2012; Kuijken, Naaldenberg, Nijhuis-Van der Sande, & Van Schrojenstein-

Lantman de Valk, 2016; Messent, Cooke, & Long, 1999). As a contrast, the general population mostly experiences

barriers as intrinsic to the individual, according to theoretical models of the determinants of physical activity

(Robertson et al., 2000). Considering the cognitive impairments of people with ID and the barriers described

above, programme materials have to be changed to be accessible for people with ID (Elinder, Bergström,

Hagberg, Wihlman, & Hagströmer, 2010). Additionally, people with ID experience barriers to access lifestyle

change services (Van Schrojenstein Lantman-De Valk & Walsh, 2008).

To improve the effectiveness of lifestyle change interventions for people with ID, it is necessary to identify the

effective ingredients within interventions (Michie et al., 2011). However, reporting of intervention content in

published articles is heterogeneous with regards to the used descriptions (Naaldenberg, Kuijken, Van Dooren, &

Van Schrojenstein Lantman-De Valk, 2013) and is often undetailed (Michie, Fixen, Grimshaw, & Eccles, 2009). For

the general population, behaviour change techniques (BCTs) have been found to be an effective component of

interventions changing health behaviours (Bird et al., 2013; Greaves et al., 2011; Olander et al., 2013). Abraham

and Michie (2008) developed a 26-item taxonomy to categorize the BCTs. This taxonomy was later refined by

Michie et al. (2011). Multiple reviews have used these taxonomies to review the BCTs in lifestyle change

interventions for the general population (Dombrowski et al., 2012; Malik, Blake & Suggs, 2014; Olander et al.,

2013; Williams & French, 2011) and have informed the development of new interventions.

Although BCTs have been shown to be effective components of lifestyle change interventions for the general

population, it is unclear whether these BCTs can be used in the same way in interventions for people with ID (Van

138541-Willems_BNW.indd 57 31-10-19 10:07

58

Schijndel-Speet, 2015). The level of complexity and abstraction of some BCTs may complicate their use for this

population, given the intellectual disabilities and special needs of people with ID (Kuijken et al., 2016; Robertson

et al., 2000). Scott and Havercamp (2016) reviewed lifestyle change interventions for people with ID and

described the content and structure of the interventions. However, they did not examine the BCTs used within

the interventions. As a consequence, there is no research on BCTs as a possible effective ingredient used in

lifestyle change interventions for people with ID. Therefore, this review will examine how BCTs are applied in

lifestyle change interventions for people with ID and describes the quality of these studies.

2 | METHODS


An extensive search strategy (see Appendix 1) was used to retrieve papers from the electronic databases Embase,

Medline (OvidSP), Web of Science, Psychinfo (OvidSP), Cochrane, PubMed publisher and from Google Scholar.

This search was conducted in March 2015 with an information specialist of the Erasmus MC University Medical

Center Rotterdam. Reference lists from included papers (N = 55) as well as from relevant review papers (n = 51)

retrieved in the original dataset were hand searched for missed papers fulfilling the inclusion criteria.



Papers were eligible if they discussed lifestyle change interventions for people with ID, in all age ranges, with all

levels of ID. To be included in the review, the intervention had to target changes in physical activity (PA), nutrition

(e.g. increasing levels of physical activity or fitness, improving nutrition habits, or reducing weight) or both

physical activity and nutrition. In the paper, the authors had to state that the intervention program aimed to

achieve a change in daily lifestyle. Only peer-reviewed journal articles, published between 2000 and 2015 and

written in English were eligible for inclusion. Study outcomes had to include at least one aspect of participants’

PA levels, cardiorespiratory fitness, body composition or dietary intake. Adherence to PA or nutrition programs

was also considered a relevant outcome measure.


Excluded were interventions focusing only on staff or caregivers of people with ID, and papers discussing

interventions for people with autism, schizophrenia or other psychiatric disorders without explicitly mentioning

ID. Papers with study outcomes on improving motor performance or skills, improving inflammation, oxidative

stress, blood composition, or muscle mass, or solely improving other fitness components than cardiorespiratory

fitness (such as strength, balance, flexibility, reaction time, speed, agility) or on cognitive outcomes, were

excluded. Furthermore, interventions using lab-based training or exercise programs (as opposed to community-

based) and interventions with hormone therapy or other medical treatment for weight control, or interventions

focusing on smoking cessation, alcohol or drug use, were excluded. Studies with less than six participants were

59

excluded because the results of small case studies are hard to interpret or generalise for the entire ID population.

Review papers, conference abstracts and editorials were also excluded.

2.2.3 | Screening process

In the first stage of the selection process, 10% of the title screening was conducted by two authors (EH and TH),

resulting in 97.7% agreement; the remaining 90% of titles were screened by one author (EH). Screening all

abstracts and, subsequently, completing inclusion checklists for the full-text papers were done by two authors

(EH and TH) and disagreements were resolved by a consensus discussion. For two records the full-text article was

unavailable, after the authors were contacted. Therefore, these articles were excluded. See Figure 1 for a flow

diagram of the search process.


A data extraction form was developed, partly based on Olander et al. (2013), and refined after testing on two

randomly selected studies, by two authors (MW and CM), see Appendix 2. Two reviewers (MW and CM)

independently performed both data extraction and the quality assessment. Results were compared and

disagreements were resolved by consensus discussion. In the case of remaining uncertainty, a third author (TH)

was consulted. Multiple reports of the same intervention study were counted as two papers during the data

extraction, but counted as one in the analysis, e.g. Bodde, Seo, Frey, Lohrmann, and Van Puymbroeck (2012) and

Bodde, Seo, Frey, Van Puymbroeck, and Lohrmann (2012) concerned a study protocol and an outcome paper for

the same study.

Data extracted from the papers were categorized as (1) General study characteristics (aim of intervention, study

design, sample characteristics); (2) Intervention characteristics (short description, theoretical framework,

setting, duration, frequency, intensity, deliverer and mode of delivery of intervention); and (3) Use of BCTs in the

intervention.

For coding of the BCTs the Coventry Aberdeen London Refined (CALORE) taxonomy was used (Michie, Ashford,

Sniehotta et al., 2011). This taxonomy consists of a 40-item list of theory-based definitions of behaviour change

techniques that may be used in interventions aiming to improve physical activity or nutrition. General study

characteristics and intervention characteristics were extracted by one author (MW) and BCTs were coded by two

authors (MW and CM).

138541-Willems_BNW.indd 58 31-10-19 10:07

58

Schijndel-Speet, 2015). The level of complexity and abstraction of some BCTs may complicate their use for this

population, given the intellectual disabilities and special needs of people with ID (Kuijken et al., 2016; Robertson

et al., 2000). Scott and Havercamp (2016) reviewed lifestyle change interventions for people with ID and

described the content and structure of the interventions. However, they did not examine the BCTs used within

the interventions. As a consequence, there is no research on BCTs as a possible effective ingredient used in

lifestyle change interventions for people with ID. Therefore, this review will examine how BCTs are applied in

lifestyle change interventions for people with ID and describes the quality of these studies.

2 | METHODS


An extensive search strategy (see Appendix 1) was used to retrieve papers from the electronic databases Embase,

Medline (OvidSP), Web of Science, Psychinfo (OvidSP), Cochrane, PubMed publisher and from Google Scholar.

This search was conducted in March 2015 with an information specialist of the Erasmus MC University Medical

Center Rotterdam. Reference lists from included papers (N = 55) as well as from relevant review papers (n = 51)

retrieved in the original dataset were hand searched for missed papers fulfilling the inclusion criteria.



Papers were eligible if they discussed lifestyle change interventions for people with ID, in all age ranges, with all

levels of ID. To be included in the review, the intervention had to target changes in physical activity (PA), nutrition

(e.g. increasing levels of physical activity or fitness, improving nutrition habits, or reducing weight) or both

physical activity and nutrition. In the paper, the authors had to state that the intervention program aimed to

achieve a change in daily lifestyle. Only peer-reviewed journal articles, published between 2000 and 2015 and

written in English were eligible for inclusion. Study outcomes had to include at least one aspect of participants’

PA levels, cardiorespiratory fitness, body composition or dietary intake. Adherence to PA or nutrition programs

was also considered a relevant outcome measure.


Excluded were interventions focusing only on staff or caregivers of people with ID, and papers discussing

interventions for people with autism, schizophrenia or other psychiatric disorders without explicitly mentioning

ID. Papers with study outcomes on improving motor performance or skills, improving inflammation, oxidative

stress, blood composition, or muscle mass, or solely improving other fitness components than cardiorespiratory

fitness (such as strength, balance, flexibility, reaction time, speed, agility) or on cognitive outcomes, were

excluded. Furthermore, interventions using lab-based training or exercise programs (as opposed to community-

based) and interventions with hormone therapy or other medical treatment for weight control, or interventions

focusing on smoking cessation, alcohol or drug use, were excluded. Studies with less than six participants were

59

excluded because the results of small case studies are hard to interpret or generalise for the entire ID population.

Review papers, conference abstracts and editorials were also excluded.

2.2.3 | Screening process

In the first stage of the selection process, 10% of the title screening was conducted by two authors (EH and TH),

resulting in 97.7% agreement; the remaining 90% of titles were screened by one author (EH). Screening all

abstracts and, subsequently, completing inclusion checklists for the full-text papers were done by two authors

(EH and TH) and disagreements were resolved by a consensus discussion. For two records the full-text article was

unavailable, after the authors were contacted. Therefore, these articles were excluded. See Figure 1 for a flow

diagram of the search process.


A data extraction form was developed, partly based on Olander et al. (2013), and refined after testing on two

randomly selected studies, by two authors (MW and CM), see Appendix 2. Two reviewers (MW and CM)

independently performed both data extraction and the quality assessment. Results were compared and

disagreements were resolved by consensus discussion. In the case of remaining uncertainty, a third author (TH)

was consulted. Multiple reports of the same intervention study were counted as two papers during the data

extraction, but counted as one in the analysis, e.g. Bodde, Seo, Frey, Lohrmann, and Van Puymbroeck (2012) and

Bodde, Seo, Frey, Van Puymbroeck, and Lohrmann (2012) concerned a study protocol and an outcome paper for

the same study.

Data extracted from the papers were categorized as (1) General study characteristics (aim of intervention, study

design, sample characteristics); (2) Intervention characteristics (short description, theoretical framework,

setting, duration, frequency, intensity, deliverer and mode of delivery of intervention); and (3) Use of BCTs in the

intervention.

For coding of the BCTs the Coventry Aberdeen London Refined (CALORE) taxonomy was used (Michie, Ashford,

Sniehotta et al., 2011). This taxonomy consists of a 40-item list of theory-based definitions of behaviour change

techniques that may be used in interventions aiming to improve physical activity or nutrition. General study

characteristics and intervention characteristics were extracted by one author (MW) and BCTs were coded by two

authors (MW and CM).

138541-Willems_BNW.indd 59 31-10-19 10:07

60



Embase.com : 2813 Medline (OvidSP) : 1533Web of science : 2040 PsychINFO (OvidSP) : 1372Cinahl (ebsco) : 948 Cochrane : 148PubMed publisher : 80 Google scholar : 200

Records screened by abstractN = 360

Excluded after title screening N = 5467

Excluded after abstract screening N = 218

Potentially relevant full text articlesN = 142

Articles not retrieved in full text N = 2

Articles meeting eligibility criteria for review N = 55

Records screened by title N = 5827


Excluded after assessment of full text N = 85


Included articles for data extraction N=56

Hand search, 1 article added


Excluded during data extraction N = 11

61

2.4 | Quality assessment

The quality of the selected articles was assessed using the 10-point Physiotherapy Evidence Database (PEDro)

scale (Maher, Sherrington, Herbert, Moseley, & Elkins, 2003; PEDro, 2015). The purpose of the PEDro scale is to

support users to determine the internal and external validity of studies (PEDro, 2015; Sherrington, Herbert,

Maher, & Moseley, 2000). The first criterion of the scale describes the study’s external validity, but is not used

calculating the final PEDro score. Criteria 2–9 describe the study’s internal validity, while criteria 10 and 11

describe the interpretability of the results (Sherrington et al., 2000). The PEDro scale includes the following

criteria: (1) eligibility criteria were specified (2) random allocation to groups (3) concealed allocation (4) similar

groups at baseline regarding the most important prognostic indicators (5) blinding of all subjects (6) blinding of

all therapists who administered the therapy (7) blinding of all assessors who measured at least one key outcome

(8) measures of at least one key outcome were obtained from more than 85% of the subjects initially allocated

to groups (9) all subjects for whom outcome measures were available received the treatment or control condition

as allocated or, where this was not the case, data for at least one key outcome was analysed by ‘intention to

treat’ (10) reported results of between-group statistical comparisons for at least one key outcome (11) both point

measures and measures of variability are provided for at least one key outcome. The criteria are rated on a yes-

no score and the total of yes-scores gives the PEDro scale score of the article (Sherrington et al., 2000).

2.5 | Synthesis of results

Included articles were categorized together by their aim (e.g. physical activity, nutrition, or both physical activity

and nutrition) in the result tables and the result section in the paper. The extracted data were organized in

general characteristics, intervention characteristics, BCTs and PEDro quality scores.

3 | RESULTS

Table 1 provides an overview of the most important results, categorized by the aim of the studies to change

physical activity, nutrition or both physical activity and nutrition. Table 2 shows the used BCTs in all of the

interventions. Details of the results can be found in four supplemental tables. Table S1 provides an overview of

the study characteristics. Table S2 gives detailed information of the intervention characteristics. Table S3 shows

the ratings for all BCTs. Table S4 shows the results of the PEDro quality assessment.

3.1 | General characteristics

The three categories of studies (aiming to promote physical activity, nutrition or both physical activity and

nutrition) all showed considerable variation in the number of participants, ranging from six to 443 participants

(Table 1). The population of the studies differed between the three study categories: most physical activity

interventions (53%) and physical activity and nutrition interventions (87%) were designed for adults with ID,

while a small majority of the nutrition interventions was designed for children or adolescents with ID (67%). The

level of ID varied in all three study categories. Further details of the study characteristics are provided in

supplementary Table S1.

138541-Willems_BNW.indd 60 31-10-19 10:07

60



Embase.com : 2813 Medline (OvidSP) : 1533Web of science : 2040 PsychINFO (OvidSP) : 1372Cinahl (ebsco) : 948 Cochrane : 148PubMed publisher : 80 Google scholar : 200

Records screened by abstractN = 360

Excluded after title screening N = 5467

Excluded after abstract screening N = 218

Potentially relevant full text articlesN = 142

Articles not retrieved in full text N = 2

Articles meeting eligibility criteria for review N = 55

Records screened by title N = 5827


Excluded after assessment of full text N = 85


Included articles for data extraction N=56

Hand search, 1 article added


Excluded during data extraction N = 11

61

2.4 | Quality assessment

The quality of the selected articles was assessed using the 10-point Physiotherapy Evidence Database (PEDro)

scale (Maher, Sherrington, Herbert, Moseley, & Elkins, 2003; PEDro, 2015). The purpose of the PEDro scale is to

support users to determine the internal and external validity of studies (PEDro, 2015; Sherrington, Herbert,

Maher, & Moseley, 2000). The first criterion of the scale describes the study’s external validity, but is not used

calculating the final PEDro score. Criteria 2–9 describe the study’s internal validity, while criteria 10 and 11

describe the interpretability of the results (Sherrington et al., 2000). The PEDro scale includes the following

criteria: (1) eligibility criteria were specified (2) random allocation to groups (3) concealed allocation (4) similar

groups at baseline regarding the most important prognostic indicators (5) blinding of all subjects (6) blinding of

all therapists who administered the therapy (7) blinding of all assessors who measured at least one key outcome

(8) measures of at least one key outcome were obtained from more than 85% of the subjects initially allocated

to groups (9) all subjects for whom outcome measures were available received the treatment or control condition

as allocated or, where this was not the case, data for at least one key outcome was analysed by ‘intention to

treat’ (10) reported results of between-group statistical comparisons for at least one key outcome (11) both point

measures and measures of variability are provided for at least one key outcome. The criteria are rated on a yes-

no score and the total of yes-scores gives the PEDro scale score of the article (Sherrington et al., 2000).

2.5 | Synthesis of results

Included articles were categorized together by their aim (e.g. physical activity, nutrition, or both physical activity

and nutrition) in the result tables and the result section in the paper. The extracted data were organized in

general characteristics, intervention characteristics, BCTs and PEDro quality scores.

3 | RESULTS

Table 1 provides an overview of the most important results, categorized by the aim of the studies to change

physical activity, nutrition or both physical activity and nutrition. Table 2 shows the used BCTs in all of the

interventions. Details of the results can be found in four supplemental tables. Table S1 provides an overview of

the study characteristics. Table S2 gives detailed information of the intervention characteristics. Table S3 shows

the ratings for all BCTs. Table S4 shows the results of the PEDro quality assessment.


The three categories of studies (aiming to promote physical activity, nutrition or both physical activity and

nutrition) all showed considerable variation in the number of participants, ranging from six to 443 participants

(Table 1). The population of the studies differed between the three study categories: most physical activity

interventions (53%) and physical activity and nutrition interventions (87%) were designed for adults with ID,

while a small majority of the nutrition interventions was designed for children or adolescents with ID (67%). The

level of ID varied in all three study categories. Further details of the study characteristics are provided in

supplementary Table S1.

138541-Willems_BNW.indd 61 31-10-19 10:07

62

62

Tabl

e 1:

Ove

rvie

w o

f the

resu

lts, c

ateg

orize

d by

the

aim

of t

he st

udie

s

St

udie

s ai

min

g to

impr

ove

phys

ical

activ

ity (N

=15)

St

udie

s aim

ing

to im

prov

e nu

triti

on

(N=3

) St

udie

s ai

min

g to

im

prov

e bo

th

phys

ical

activ

ity

and

nutr

ition

(N

=23)

Gene

ral c

hara

cter

istics

:

Mea

n no

of p

artic

ipan

ts (r

ange

) 64

(8-1

91)

51 (1

2-89

) 74

(6-4

43)

Mos

t tar

gete

d po

pula

tion

Adul

ts w

ith ID

(53%

) Yo

uth/

adol

esce

nts w

ith ID

(67%

) Ad

ults

with

ID (8

7%)

Rang

e of

mea

n ag

e (r

ange

of a

ge)

12.2

-41.

3 (8

-80+

) 19

-40.

3 (9

-63)

14

.9-4

6.9

(10-

71)

Mos

t tar

gete

d le

vel o

f ID

(%)

Mild

-mod

erat

e: (3

3%)

Mild

-Mod

erat

e (3

3%)

Mild

-Mod

erat

e (4

5%)

Sex,

rang

e of

% o

f fem

ales

33

-58

49-6

7 25

-100

Mos

t use

d in

terv

entio

n se

ttin

g Tr

aini

ng fa

cility

(33%

) Sc

hool

(66%

) Ho

me

of p

artic

ipan

ts (4

3%)

Inte

rven

tion

char

acte

ristic

s:

Mos

t use

d de

sign

Case

serie

s (53

%)

Case

serie

s (67

%)

Case

serie

s (48

%)

Use

of a

ny th

eore

tical

fram

ewor

k No

ne (7

3%)

None

(100

%)

None

(74%

)

Mos

t use

d th

eore

tical

fram

ewor

k Th

eory

of

plan

ned

beha

viou

r an

d so

cial c

ogni

tive

theo

ry (1

5%)

- So

cial c

ogni

tive

theo

ry (2

6%)

Inte

rven

tion

dura

tion

rang

e 1

wee

k-24

mon

ths

6-12

mon

ths

6 w

eeks

-24

mon

ths

Freq

uenc

y of

del

iver

y pe

r wee

k ra

nge

2-5

days

0.

5-5

days

0.

25-7

day

s

Stud

ies u

sing

follo

w-u

p 8

(53%

) 0

8 (3

5%)

Rang

e of

follo

w-u

p pe

riod

10 w

eeks

-12

mon

ths

- 2

wee

ks-4

.5 y

ears

Mos

t use

d in

terv

entio

n de

liver

y Fa

ce-to

-face

(93%

) Fa

ce-to

-face

(100

%)

Face

-to-fa

ce (1

00%

)

Beha

viou

r Cha

nge

Tech

niqu

es:

Mea

n no

of u

sed

BCTs

(SD)

per

stud

y

5.9

(5.4

) 5.

3 (5

.1)

7.8

(3.8

)

63

Rang

e of

no

of u

sed

BCTs

per

stud

y 1-

14

1-11

2-

15

No o

f BCT

s use

d pe

r cat

egor

y of

stud

ies (

PA, n

utrit

ion

or b

oth

of th

em)

22

12

31

PEDr

o qu

ality

ass

essm

ent:

Mea

n PE

Dro

scor

e (S

D), r

ange

3

(2.0

), 1-

8 1.

7 (1

.5),

0-3

2.8

(1.9

3), 0

-6

Mea

n qu

ality

of i

nter

vent

ions

(PED

ro)

Low

qua

lity

Low

qua

lity

Low

qua

lity

Tabl

e 2:

Ove

rvie

w o

f fre

quen

cies f

or u

sed

BCT

BCT

Freq

uenc

y

BCT

Freq

uenc

y

BCT

Freq

uenc

y

Prov

ide

info

rmat

ion

on c

onse

quen

ces

of b

ehav

iour

in g

ener

al

27

Prom

pt re

war

ds co

ntin

gent

on

effo

rt o

r pro

gres

s

tow

ards

beh

avio

ur

7 Pr

ompt

ing

gene

ralis

atio

n of

a ta

rget

beh

avio

ur

2

Plan

socia

l sup

port

/soc

ial c

hang

e 26

Pr

ompt

self-

mon

itorin

g of

beh

avio

ural

out

com

e 7

Prov

ide

info

rmat

ion

abou

t oth

ers'

appr

oval

1

Prov

ide

inst

ruct

ion

on h

ow to

per

form

the

beha

viou

r

23

Rela

pse

prev

entio

n/co

ping

pla

nnin

g 8

Shap

ing

1

Goal

sett

ing

(beh

avio

ur)

19

Prom

pt re

view

of b

ehav

iour

al g

oals

6 St

imul

ate

antic

ipat

ion

of fu

ture

rew

ards

1

Prom

pt p

ract

ice

17

Goal

setti

ng (o

utco

me)

5

Prov

ide

info

rmat

ion

on c

onse

quen

ces

of b

ehav

iour

to

the

indi

vidu

al

0

Barr

ier i

dent

ifica

tion/

prob

lem

solv

ing

15

Prom

ptin

g fo

cus o

n pa

st su

cces

s 5

Prov

ide

norm

ativ

e in

form

atio

n ab

out

othe

rs'

beha

viou

r

0

Prom

pt se

lf-m

onito

ring

of b

ehav

iour

14

Ge

nera

l com

mun

icatio

n sk

ills t

rain

ing

5 Ag

ree

beha

viou

ral c

ontr

act

0

Actio

n pl

anni

ng

13

Prom

pt re

view

of o

utco

me

goal

s 4

Prom

pt a

ntici

pate

d re

gret

0

Mod

el/d

emon

stra

te th

e be

havi

our

13

Teac

h to

use

pro

mpt

s/cu

es

4 Fe

ar a

rous

al

0

138541-Willems_BNW.indd 62 31-10-19 10:07

63

63

Rang

e of

no

of u

sed

BCTs

per

stud

y 1-

14

1-11

2-

15

No o

f BCT

s use

d pe

r cat

egor

y of

stud

ies (

PA, n

utrit

ion

or b

oth

of th

em)

22

12

31

PEDr

o qu

ality

ass

essm

ent:

Mea

n PE

Dro

scor

e (S

D), r

ange

3

(2.0

), 1-

8 1.

7 (1

.5),

0-3

2.8

(1.9

3), 0

-6

Mea

n qu

ality

of i

nter

vent

ions

(PED

ro)

Low

qua

lity

Low

qua

lity

Low

qua

lity

Tabl

e 2:

Ove

rvie

w o

f fre

quen

cies f

or u

sed

BCT

BCT

Freq

uenc

y

BCT

Freq

uenc

y

BCT

Freq

uenc

y

Prov

ide

info

rmat

ion

on c

onse

quen

ces

of b

ehav

iour

in g

ener

al

27

Prom

pt re

war

ds co

ntin

gent

on

effo

rt o

r pro

gres

s

tow

ards

beh

avio

ur

7 Pr

ompt

ing

gene

ralis

atio

n of

a ta

rget

beh

avio

ur

2

Plan

socia

l sup

port

/soc

ial c

hang

e 26

Pr

ompt

self-

mon

itorin

g of

beh

avio

ural

out

com

e 7

Prov

ide

info

rmat

ion

abou

t oth

ers'

appr

oval

1

Prov

ide

inst

ruct

ion

on h

ow to

per

form

the

beha

viou

r

23

Rela

pse

prev

entio

n/co

ping

pla

nnin

g 8

Shap

ing

1

Goal

sett

ing

(beh

avio

ur)

19

Prom

pt re

view

of b

ehav

iour

al g

oals

6 St

imul

ate

antic

ipat

ion

of fu

ture

rew

ards

1

Prom

pt p

ract

ice

17

Goal

setti

ng (o

utco

me)

5

Prov

ide

info

rmat

ion

on c

onse

quen

ces

of b

ehav

iour

to

the

indi

vidu

al

0

Barr

ier i

dent

ifica

tion/

prob

lem

solv

ing

15

Prom

ptin

g fo

cus o

n pa

st su

cces

s 5

Prov

ide

norm

ativ

e in

form

atio

n ab

out

othe

rs'

beha

viou

r

0

Prom

pt se

lf-m

onito

ring

of b

ehav

iour

14

Ge

nera

l com

mun

icatio

n sk

ills t

rain

ing

5 Ag

ree

beha

viou

ral c

ontr

act

0

Actio

n pl

anni

ng

13

Prom

pt re

view

of o

utco

me

goal

s 4

Prom

pt a

ntici

pate

d re

gret

0

Mod

el/d

emon

stra

te th

e be

havi

our

13

Teac

h to

use

pro

mpt

s/cu

es

4 Fe

ar a

rous

al

0

138541-Willems_BNW.indd 63 31-10-19 10:07

64

64

Prov

ide

feed

back

on

perfo

rman

ce

11

Facil

itate

socia

l com

paris

on

4 Pr

ompt

self-

talk

0

Prov

ide

info

rmat

ion

on w

here

and

whe

n to

per

form

beh

avio

ur

10

Stre

ss m

anag

emen

t/em

otio

nal c

ontr

ol tr

aini

ng

4 Pr

ompt

use

of i

mag

ery

0

Prov

ide

rew

ards

co

ntin

gent

on

succ

essf

ul b

ehav

iour

9 Us

e of

follo

w-u

p pr

ompt

s 3

Mot

ivat

iona

l int

ervi

ewin

g 0

Set g

rade

d ta

sks

9 Pr

ompt

ide

ntifi

catio

n as

rol

e m

odel

/pos

ition

advo

cate

3 Ti

me

man

agem

ent

0

Envi

ronm

enta

l res

truc

turin

g 8

65

3.2 | Intervention characteristics

A case series was the most commonly used design in all three study categories (n = 21) (Table 1). According to

Reeves, Deeks, Higgins, and Wells (2008), a case series is a study that collects observations on a series of

individuals, receiving the same intervention. These observations are made before and after an intervention, with

no control group (Reeves et al., 2008). Another similarity in the three study categories was the lack of a

theoretical framework to inform the design of the intervention (n = 31). Only three studies mentioned the use of

behaviour change techniques in the description of the intervention components (Beeken et al., 2013; Mitchell et

al., 2013; Van Schijndel-Speet, Evenhuis, Van Empelen, Van Wijck, & Echteld, 2013). Two of these studies were

aimed at physical activity (Mitchell et al., 2013; Van Schijndel-Speet et al., 2013) and one aimed both physical

activity and nutrition (Beeken et al., 2013) (Table S2). A few studies (n = 16) included a follow-up period (Tables

1 and S2). All studies used face-to-face delivery, except the physical activity intervention of Thomas and Kerr

(2011), which was delivered by log-books. These log-books contained information about exercise and helped

clients to set personal goals. Details of the intervention characteristics can be found in supplementary Table S2.

3.3 | Behaviour change techniques

All of the interventions used at least one BCT. However, not all of the BCTs were used in the studies (Table 2)

with 9/40 BCTs not used in any of the included studies. The studies in the both physical activity and nutrition

intervention category (n = 23) used the largest proportion of the BCTs, using 31 out of the 40 BCTs, while the

physical activity interventions (n = 15) used 22 different BCTs and the nutrition studies (n = 3) used 12 different

BCTs (Table 1). The mean number of BCTs used in the different categories of interventions was 5.9 (SD 4.0; Range

1–14) for the physical activity interventions, 5.3 (SD 5.10; Range 1–11) for the nutrition interventions and 7.8 (SD

3.8; Range 2–15) for the both physical activity and nutrition interventions. An overview of the ratings for BCTs

used is provided in supplementary Table S3.

The three categories of studies all frequently used “Provide information on consequences of behaviour in

general” (n = 27) and the “Social support” BCT (n = 26) but there was a wide variation in which BCTs were

commonly used (Tables 2 and Table S3). “Social support” means the help of others to achieve a target

behaviour/outcome. This will include support during interventions e.g., setting up a ‘buddy’ system or other

forms of support and following the intervention including support provided by the individuals delivering the

intervention, partner, friends, family (Michie et al., 2011). Physical activity interventions, and nutrition

interventions both frequently used the BCT ‘Instruction on how to perform the behaviour’, but only 50% of the

interventions to improve both physical activity and nutrition used this BCT (Table S3). The nutrition interventions

and the both physical activity and nutrition interventions frequently used the BCT ‘Provide information on

consequences in general’, but this BCT was used in less than half of the physical activity interventions.

3.4 | PEDro quality scores

While most of the interventions in all three categories of studies were of low quality, the RCT studies (10/13)

were of medium or even high quality, in the category of physical activity studies and the category of both physical

138541-Willems_BNW.indd 64 31-10-19 10:07

65

3.2 | Intervention characteristics

A case series was the most commonly used design in all three study categories (n = 21) (Table 1). According to

Reeves, Deeks, Higgins, and Wells (2008), a case series is a study that collects observations on a series of

individuals, receiving the same intervention. These observations are made before and after an intervention, with

no control group (Reeves et al., 2008). Another similarity in the three study categories was the lack of a

theoretical framework to inform the design of the intervention (n = 31). Only three studies mentioned the use of

behaviour change techniques in the description of the intervention components (Beeken et al., 2013; Mitchell et

al., 2013; Van Schijndel-Speet, Evenhuis, Van Empelen, Van Wijck, & Echteld, 2013). Two of these studies were

aimed at physical activity (Mitchell et al., 2013; Van Schijndel-Speet et al., 2013) and one aimed both physical

activity and nutrition (Beeken et al., 2013) (Table S2). A few studies (n = 16) included a follow-up period (Tables

1 and S2). All studies used face-to-face delivery, except the physical activity intervention of Thomas and Kerr

(2011), which was delivered by log-books. These log-books contained information about exercise and helped

clients to set personal goals. Details of the intervention characteristics can be found in supplementary Table S2.


All of the interventions used at least one BCT. However, not all of the BCTs were used in the studies (Table 2)

with 9/40 BCTs not used in any of the included studies. The studies in the both physical activity and nutrition

intervention category (n = 23) used the largest proportion of the BCTs, using 31 out of the 40 BCTs, while the

physical activity interventions (n = 15) used 22 different BCTs and the nutrition studies (n = 3) used 12 different

BCTs (Table 1). The mean number of BCTs used in the different categories of interventions was 5.9 (SD 4.0; Range

1–14) for the physical activity interventions, 5.3 (SD 5.10; Range 1–11) for the nutrition interventions and 7.8 (SD

3.8; Range 2–15) for the both physical activity and nutrition interventions. An overview of the ratings for BCTs

used is provided in supplementary Table S3.

The three categories of studies all frequently used “Provide information on consequences of behaviour in

general” (n = 27) and the “Social support” BCT (n = 26) but there was a wide variation in which BCTs were

commonly used (Tables 2 and Table S3). “Social support” means the help of others to achieve a target

behaviour/outcome. This will include support during interventions e.g., setting up a ‘buddy’ system or other

forms of support and following the intervention including support provided by the individuals delivering the

intervention, partner, friends, family (Michie et al., 2011). Physical activity interventions, and nutrition

interventions both frequently used the BCT ‘Instruction on how to perform the behaviour’, but only 50% of the

interventions to improve both physical activity and nutrition used this BCT (Table S3). The nutrition interventions

and the both physical activity and nutrition interventions frequently used the BCT ‘Provide information on

consequences in general’, but this BCT was used in less than half of the physical activity interventions.

3.4 | PEDro quality scores

While most of the interventions in all three categories of studies were of low quality, the RCT studies (10/13)

were of medium or even high quality, in the category of physical activity studies and the category of both physical

138541-Willems_BNW.indd 65 31-10-19 10:07

66

activity and nutrition studies. None of the nutrition studies used an RCT design. All case series were of low quality,

except for one physical activity study (Bodde, Seo, Frey, Lohrmann et al., 2012) and one both physical activity

and nutrition study (Pett et al., 2013), which were of medium quality. The most common limitation was the same

for all three categories of studies, namely insufficient blinding of patients/therapists/assessors. The results of the

PEDro quality assessment are provided in Table S4.

4 | DISCUSSION


This systematic review aimed to identify the BCTs used in interventions targeting physical activity, nutrition or

both physical activity and nutrition for people with ID, and to describe the quality of these interventions. All

interventions used at least one BCT, but BCTs were rarely used within the context of a theoretical framework for

intervention design. Given their complexity, it is still unclear to what extent BCTs are accessible for people with

ID.


BCTs were used in all interventions, which may indicate that the importance of BCTs is recognized by researchers

developing interventions. Several of the most commonly used BCTs are similar to facilitators of health behaviour

for people with ID as reported by adults with ID (Kuijken et al., 2016). For example, adults with ID reported that

support from others, motivational support and environmental resources can facilitate health behaviour which

reflects two of the most commonly used BCTs found in this review (Kuijken et al., 2016). In fact, most BCTs in this

review are consistent with these facilitators, as they are aimed at providing social support or maintaining the

motivation of participants. This suggests that the BCTs used in the studies included here meet the needs for

health behaviour of people with ID.

However, many of the BCTs included in the CALORE taxonomy are complex and involve a significant amount of

abstraction. This raises a question about the extent to which BCTs are accessible for people with ID. People with

ID may experience challenges to interpret knowledge and may not be able to live healthy although they have the

required knowledge (Kuijken et al., 2016). This might indicate that complex BCTs will not fit into the capabilities

of people with ID, which may make these BCTs ineffective when included in lifestyle change interventions. For

example, a trial of a walking intervention reported that, even with support from carers, most participants with

ID were unable to use pedometers to self-monitor daily step count (Melville et al., 2015). This is particularly

relevant because self-monitoring has been shown to be important to the effectiveness of lifestyle change

interventions (Michie, Fixsen et al., 2009; Michie, Jochelson et al., 2009). It is recommended that researchers

minimize and simplify the BCTs included in lifestyle change interventions for disadvantaged groups (Michie,

Jochelson, Markham, & Bridle, 2009). However, many of the interventions used ten or more BCTs. To tailor

lifestyle change interventions to the needs of people with ID, researchers should consider testing whether

individual BCTs can be made accessible, for example via support from carers, or using assistive technology, and

67

during the design phase of interventions give careful consideration to which, and how many, BCTs should be

included.

4.3 | Quality of the included studies

Low quality scores were found for a majority of the included lifestyle change interventions, as was also found in

a previous review of Scott and Havercamp (2016). In line with another review, the most common limitation was

blinding of participants, therapists and assessors (Ogg-Groenendaal et al., 2014). Additionally, data presentation

was often incomplete and studies mostly failed to report accurate about recruitment of participants, drop-out

rates and baseline similarities. This may result in different interpretations of the intervention content and issues

with representativeness and generalisation of the findings. This is in line with a review of Scott and Havercamp

(2016), which found that most lifestyle change interventions use weak designs. Weak designs made findings

about effectiveness of the included studies less reliable since the design of the study is used to quantitatively

test the study (Scott & Havercamp, 2016). Our findings correspond with the commentary that there is

heterogeneity in reporting intervention content in lifestyle change research (Michie et al., 2011; Naaldenberg et

al., 2013; Ogg-Groenendaal et al., 2014). Heterogeneity is also found for multiple study characteristics, like levels

of disability, setting of the interventions, the targeted populations and the aimed lifestyle change (nutrition or

PA, or both PA and nutrition). Only three studies were aimed at changing nutrition, which makes it hard to

generalise the findings from this category of studies. This might indicate that lifestyle change is dependent on

the specific social and cultural context, and therefore research in this field might need to be tailored to the

specific situation and context of the people with ID. However, the majority of included studies do not properly

describe context related characteristics, as mentioned above. Also, the varying level of disability could affect the

efficacy of the studies, because the level of ID determines the understanding of participants. Therefore,

intervention content needs to be tailored to the capabilities of the participants.

Although a theoretical base is important for interventions in order to be effective and for understanding of the

results, a majority of the included studies did not use any kind of theoretical framework. In addition, the BCTs

were mostly used in an implicit way, not referring to any theoretical base nor describing the BCT explicitly. In the

field of lifestyle change for the general population, the same lack of theoretical base has been found (Golley,

Hendrie, Slater & Corsini, 2011). Furthermore, the RCT is the gold standard to evaluate lifestyle change

interventions (Tones, 2000), but an RCT design was not often used in the included interventions. This could partly

be explained by perceptions about the ethical issues surrounding the inclusion of people with ID in lifestyle

change research. For example, the conflict between one’s own autonomy to participate and the dependence on

family and staff for participation (Maïano et al., 2014; Naaldenberg et al., 2013; Spanos, Melville, & Hankey,

2013). Also, previous research shows high drop-out rates and large amount of incomplete data in lifestyle change

RCTs for people with ID (Bergström, Hagströmer, Hagberg, & Elinder, 2013; McDermott et al., 2012; Van

Schijndel-Speet, Evenhuis, Van Wijck, Van Montfort, & Echteld, 2016), which may limit the generalizability of the

results. Naaldenberg et al. (2013) called for greater use of other design studies, that can be implemented more

easily, are less expensive and fit the ethical issues experienced in research for people with ID. However, people

with ID are entitled to the same level of evidence based healthcare as all citizens and the RCTs included in this

138541-Willems_BNW.indd 66 31-10-19 10:07

66

activity and nutrition studies. None of the nutrition studies used an RCT design. All case series were of low quality,

except for one physical activity study (Bodde, Seo, Frey, Lohrmann et al., 2012) and one both physical activity

and nutrition study (Pett et al., 2013), which were of medium quality. The most common limitation was the same

for all three categories of studies, namely insufficient blinding of patients/therapists/assessors. The results of the

PEDro quality assessment are provided in Table S4.

4 | DISCUSSION


This systematic review aimed to identify the BCTs used in interventions targeting physical activity, nutrition or

both physical activity and nutrition for people with ID, and to describe the quality of these interventions. All

interventions used at least one BCT, but BCTs were rarely used within the context of a theoretical framework for

intervention design. Given their complexity, it is still unclear to what extent BCTs are accessible for people with

ID.


BCTs were used in all interventions, which may indicate that the importance of BCTs is recognized by researchers

developing interventions. Several of the most commonly used BCTs are similar to facilitators of health behaviour

for people with ID as reported by adults with ID (Kuijken et al., 2016). For example, adults with ID reported that

support from others, motivational support and environmental resources can facilitate health behaviour which

reflects two of the most commonly used BCTs found in this review (Kuijken et al., 2016). In fact, most BCTs in this

review are consistent with these facilitators, as they are aimed at providing social support or maintaining the

motivation of participants. This suggests that the BCTs used in the studies included here meet the needs for

health behaviour of people with ID.

However, many of the BCTs included in the CALORE taxonomy are complex and involve a significant amount of

abstraction. This raises a question about the extent to which BCTs are accessible for people with ID. People with

ID may experience challenges to interpret knowledge and may not be able to live healthy although they have the

required knowledge (Kuijken et al., 2016). This might indicate that complex BCTs will not fit into the capabilities

of people with ID, which may make these BCTs ineffective when included in lifestyle change interventions. For

example, a trial of a walking intervention reported that, even with support from carers, most participants with

ID were unable to use pedometers to self-monitor daily step count (Melville et al., 2015). This is particularly

relevant because self-monitoring has been shown to be important to the effectiveness of lifestyle change

interventions (Michie, Fixsen et al., 2009; Michie, Jochelson et al., 2009). It is recommended that researchers

minimize and simplify the BCTs included in lifestyle change interventions for disadvantaged groups (Michie,

Jochelson, Markham, & Bridle, 2009). However, many of the interventions used ten or more BCTs. To tailor

lifestyle change interventions to the needs of people with ID, researchers should consider testing whether

individual BCTs can be made accessible, for example via support from carers, or using assistive technology, and

67

during the design phase of interventions give careful consideration to which, and how many, BCTs should be

included.

4.3 | Quality of the included studies

Low quality scores were found for a majority of the included lifestyle change interventions, as was also found in

a previous review of Scott and Havercamp (2016). In line with another review, the most common limitation was

blinding of participants, therapists and assessors (Ogg-Groenendaal et al., 2014). Additionally, data presentation

was often incomplete and studies mostly failed to report accurate about recruitment of participants, drop-out

rates and baseline similarities. This may result in different interpretations of the intervention content and issues

with representativeness and generalisation of the findings. This is in line with a review of Scott and Havercamp

(2016), which found that most lifestyle change interventions use weak designs. Weak designs made findings

about effectiveness of the included studies less reliable since the design of the study is used to quantitatively

test the study (Scott & Havercamp, 2016). Our findings correspond with the commentary that there is

heterogeneity in reporting intervention content in lifestyle change research (Michie et al., 2011; Naaldenberg et

al., 2013; Ogg-Groenendaal et al., 2014). Heterogeneity is also found for multiple study characteristics, like levels

of disability, setting of the interventions, the targeted populations and the aimed lifestyle change (nutrition or

PA, or both PA and nutrition). Only three studies were aimed at changing nutrition, which makes it hard to

generalise the findings from this category of studies. This might indicate that lifestyle change is dependent on

the specific social and cultural context, and therefore research in this field might need to be tailored to the

specific situation and context of the people with ID. However, the majority of included studies do not properly

describe context related characteristics, as mentioned above. Also, the varying level of disability could affect the

efficacy of the studies, because the level of ID determines the understanding of participants. Therefore,

intervention content needs to be tailored to the capabilities of the participants.

Although a theoretical base is important for interventions in order to be effective and for understanding of the

results, a majority of the included studies did not use any kind of theoretical framework. In addition, the BCTs

were mostly used in an implicit way, not referring to any theoretical base nor describing the BCT explicitly. In the

field of lifestyle change for the general population, the same lack of theoretical base has been found (Golley,

Hendrie, Slater & Corsini, 2011). Furthermore, the RCT is the gold standard to evaluate lifestyle change

interventions (Tones, 2000), but an RCT design was not often used in the included interventions. This could partly

be explained by perceptions about the ethical issues surrounding the inclusion of people with ID in lifestyle

change research. For example, the conflict between one’s own autonomy to participate and the dependence on

family and staff for participation (Maïano et al., 2014; Naaldenberg et al., 2013; Spanos, Melville, & Hankey,

2013). Also, previous research shows high drop-out rates and large amount of incomplete data in lifestyle change

RCTs for people with ID (Bergström, Hagströmer, Hagberg, & Elinder, 2013; McDermott et al., 2012; Van

Schijndel-Speet, Evenhuis, Van Wijck, Van Montfort, & Echteld, 2016), which may limit the generalizability of the

results. Naaldenberg et al. (2013) called for greater use of other design studies, that can be implemented more

easily, are less expensive and fit the ethical issues experienced in research for people with ID. However, people

with ID are entitled to the same level of evidence based healthcare as all citizens and the RCTs included in this

138541-Willems_BNW.indd 67 31-10-19 10:07

68

review suggest that it is feasible to use this design to test the effectiveness of interventions, considering the

mentioned difficulties.


A strength of this review is the systematic use of the CALO-RE taxonomy to research BCT intervention

components. This systematic way of describing BCTs has been used in the general population (Bird et al., 2013)

but not for people with ID. Another strength is the comprehensive search strategy, which gives a thorough

overview of the field of lifestyle change for people with ID. Finally, the coding of the interventions was conducted

independently by two authors, and then checked for any differences, which increased the reliability and

therefore the quality of this review.

To examine the quality of the interventions, the Physiotherapy Evidence Database (PEDro) Scale was used

whereby the quality coding was checked by two authors. This method increased the reliability of the coding and

therefore the results of this review. The use of PEDro for various intervention designs caused a more general

quality assessment, which may limit the possibility to assess the depth of the studies. However, a general quality

assessment was most appropriate for this review, because we aimed to target the differences in quality between

studies. Additionally, the use of various designs enables a more suitable overview of the actual situation in recent

literature. An even more complete overview would have been provided if not only English articles would have

been included in this review.


A review of the evaluation of effectiveness of interventions is the logical next step to explore possible

relationships between the use of certain BCTs in interventions and the effectiveness of these interventions.

Furthermore, this field could benefit from interventions that are based on an explicitly mentioned theoretical

framework, and a detailed description of intervention content would make a contribution to the existing

knowledge. Since most studies included in this research were of poor quality researchers should aim to use

rigorous designs to minimize the risk of bias.

4.6 | Conclusion

Our findings suggest that the field of lifestyle change for people with ID lacks theory-driven interventions.

Although the inclusion of BCTs can contribute to the quality and effectiveness of lifestyle change interventions,

researchers should strive to include a detailed intervention description and use rigorous research methodologies.

COMPETING INTERESTS


ACKNOWLEDGEMENT



69

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* Bodde, A. E., Seo, D. C., Frey, G. C., Van Puymbroeck, M., & Lohrmann, D. K. (2012). The effect of a designed

health education intervention on physical activity knowledge and participation of adults with intellectual

disabilities. American Journal of Health Promotion, 26(5), 313–316.

* Bradley, S. (2005). Tackling obesity in people with learning disability. Learning Disability Practice, 8(7), 10-14.



Physical Activity and Health, 12(3), 434–444.

* Casey, A., Boyd, C., MacKenzie, S., & Rasmussen, R. (2012). Dual-energy x-ray absorptiometry to measure the

effects of a thirteen-week moderate to vigorous aquatic exercise and nutritional education intervention

on percent body fat in adults with intellectual disabilities from group home settings. Journal of Human

Kinetics, 32, 221-229.

138541-Willems_BNW.indd 68 31-10-19 10:07

68

review suggest that it is feasible to use this design to test the effectiveness of interventions, considering the

mentioned difficulties.


A strength of this review is the systematic use of the CALO-RE taxonomy to research BCT intervention

components. This systematic way of describing BCTs has been used in the general population (Bird et al., 2013)

but not for people with ID. Another strength is the comprehensive search strategy, which gives a thorough

overview of the field of lifestyle change for people with ID. Finally, the coding of the interventions was conducted

independently by two authors, and then checked for any differences, which increased the reliability and

therefore the quality of this review.

To examine the quality of the interventions, the Physiotherapy Evidence Database (PEDro) Scale was used

whereby the quality coding was checked by two authors. This method increased the reliability of the coding and

therefore the results of this review. The use of PEDro for various intervention designs caused a more general

quality assessment, which may limit the possibility to assess the depth of the studies. However, a general quality

assessment was most appropriate for this review, because we aimed to target the differences in quality between

studies. Additionally, the use of various designs enables a more suitable overview of the actual situation in recent

literature. An even more complete overview would have been provided if not only English articles would have

been included in this review.


A review of the evaluation of effectiveness of interventions is the logical next step to explore possible

relationships between the use of certain BCTs in interventions and the effectiveness of these interventions.

Furthermore, this field could benefit from interventions that are based on an explicitly mentioned theoretical

framework, and a detailed description of intervention content would make a contribution to the existing

knowledge. Since most studies included in this research were of poor quality researchers should aim to use

rigorous designs to minimize the risk of bias.

4.6 | Conclusion

Our findings suggest that the field of lifestyle change for people with ID lacks theory-driven interventions.

Although the inclusion of BCTs can contribute to the quality and effectiveness of lifestyle change interventions,

researchers should strive to include a detailed intervention description and use rigorous research methodologies.

COMPETING INTERESTS


ACKNOWLEDGEMENT



69

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70

Caton, S., Chadwick, D., Chapman, M., Turnbull, S., Mitchell, D., & Stansfield, J. (2012). Healthy lifestyles for adults

with intellectual disability: Knowledge, barriers and facilitators. Journal of Intellectual & Developmental

Disability, 37(3), 248–259.

* Chapman, M. J., Craven, M. J., & Chadwick, D. D. (2005). Fighting fit? An evaluation of health practitioner input

to improve healthy living and reduce obesity for adults with learning disabilities. Journal of Intellectual


* Chapman, M. J., Craven, M. J., & Chadwick, D. D. (2008). Following up fighting fit: the long-term impact of health

practitioner input on obesity and BMI amongst adults with intellectual disabilities. Journal of Intellectual


* Cluphf, D., O’Connor, J., & Vanin, S. (2001). Effects of aerobic dance on the cardiovascular endurance of adults

with intellectual disabilities. Adapted Physical Activity Quarterly, 18(1), 60-71.

* Curtin, C., Bandini, L. G., Must, A., Gleason, J., Lividini, K., Phillips, S., ... & Fleming, R. K. (2013). Parent support


163(5), 1402-1408.


Identifying active ingredients in complex behavioural interventions for obese adults with obesity-related

co-morbidities or additional risk factors for co-morbidities: A systematic review. Health Psychology

Review, 6(1), 7–32.

* Donnelly, J. E., Saunders, R. R., Saunders, M., Washburn, R. A., Sullivan, D. K., Gibson, C. A., . . . & Rondon, M.

R. (2013). Weight management for individuals with intellectual and developmental disabilities: rationale

and design for an 18 month randomized trial. Contemporary Clinical Trials, 36(1), 116-124.

* Elinder, L. S., Bergström, H., Hagberg, J., Wihlman, U., & Hagströmer, M. (2010). Promoting a healthy diet and

physical activity in adults with intellectual disabilities living in community residences: Design and

evaluation of a cluster-randomized intervention. BMC Public Health, 10(1), 761.

* Ewing, G., McDermott, S., Thomas-Koger, M., Whitner, W., & Pierce, K. (2004). Evaluation of a cardiovascular

health program for participants with mental retardation and normal learners. Health Education &

Behavior, 31(1), 77-87.

* Geller, J. S., & Crowley, M. (2009). An empowerment group visit model as treatment for obesity in

developmentally delayed adults. Journal of Developmental and Physical Disabilities, 21(5), 345-353.

Golley, R. K., Hendrie, G. A., Slater, A., & Corsini, N. (2011). Interventions that involve parents to improve

children’s weight-related nutrition intake and activity patterns—what nutrition and activity targets and

behaviour change techniques are associated with intervention effectiveness? Obesity Reviews, 12(2),

114–130.

71

Greaves, C. J., Sheppard, K. E., Abraham, C., Hardeman, W., Roden, M., Evans, P. H., et al. (2011). Systematic

review of reviews of intervention components associated with increased effectiveness in dietary and

physical activity interventions. BMC Public Health, 11(1), 119.

Hermans, H., & Evenhuis, H. M. (2014). Multimorbidity in older adults with intellectual disabilities. Research in




Hsieh, K., Rimmer, J. H., & Heller, T. (2014). Obesity and associated factors in adults with intellectual disability.

Journal of Intellectual Disability Research: JIDR, 58(9), 851–863.

* Hubbard, K. L., Bandini, L. G., Folta, S. C., Wansink, B., & Must, A. (2014). The Adaptation of a School‐based

Health Promotion Programme for Youth with Intellectual and Developmental Disabilities: A Community

Engaged Research Process. Journal of Applied Research in Intellectual Disabilities, 27(6), 576-590.

* Jones, M. C., Walley, R. M., Leech, A., Paterson, M., Common, S., & Metcalf, C. (2007). Behavioral and

Psychosocial Outcomes of a 16‐Week Rebound Therapy‐Based Exercise Program for People with

Profound Intellectual Disabilities. Journal of Policy and Practice in Intellectual Disabilities, 4(2), 111-119.

Kuijken, N. M. J., Naaldenberg, J., Nijhuis-Van der Sanden, M. W., & Schrojenstein-Lantman de Valk, H. M. J.



* Lante, K., Stancliffe, R. J., Bauman, A., van der Ploeg, H. P., Jan, S., & Davis, G. M. (2014). Embedding sustainable

physical activities into the everyday lives of adults with intellectual disabilities: a randomised controlled

trial. BMC Public Health, 14(1), 1038.

Loveman, E., Frampton, G. K., Shepherd, J., Picot, J., Cooper, K., Bryant, J., et al. (2011). The clinical effectiveness

and cost-effectiveness of long-term weight management schemes for adults: A systematic review.

Health Technology Assessment-Southampton, 15(2), 1–182.




Maher, C. G., Sherrington, C., Herbert, R. D., Moseley, A. M., & Elkins, M. (2003). Reliability of the PEDro scale for

rating quality of randomized controlled trials. Physical Therapy, 83(8), 713–721.

Malik, S. H., Blake, H., & Suggs, L. S. (2014). A systematic review of workplace health promotion interventions for

increasing physical activity. British Journal of Health Psychology, 19(1), 149–180.

138541-Willems_BNW.indd 71 31-10-19 10:07

72

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* Marks, B., Sisirak, J., Heller, T., & Wagner, M. (2010). Evaluation of community‐based health promotion

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73

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protocol. BMC Public Health, 13(1), 1–13.


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effective techniques in changing obese individuals’ physical activity self-efficacy and behaviour: A


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* Marks, B., Sisirak, J., Heller, T., & Wagner, M. (2010). Evaluation of community‐based health promotion

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119-129.

* Marshall, D., McConkey, R., & Moore, G. (2003). Obesity in people with intellectual disabilities: the impact of

nurse‐led health screenings and health promotion activities. Journal of Advanced Nursing, 41(2), 147

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* McDermott, S., Whitner, W., Thomas-Koger, M., Mann, J. R., Clarkson, J., Barnes, T. L., et al. (2012). An efficacy

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Health Education Journal, 71(3), 278–290.

* Melville, C. A., Boyle, S., Miller, S., Macmillan, S., Penpraze, V., Pert, C., . . . & Hankey, C. R. (2011). An open

study of the effectiveness of a multi-component weight-loss intervention for adults with intellectual

disabilities and obesity. British Journal of Nutrition, 105(10), 1553-1562.



Melville, C. A., Mitchell, F., Stalker, K., Matthews, L., McConnachie, A., Murray, H. M., et al. (2015). Effectiveness

of a walking programme to support adults with intellectual disabilities to increase physical activity: Walk

well cluster-randomised controlled trial. International Journal of Behavioral Nutrition and Physical

Activity, 12(1), 1–11.

Messent, P. R., Cooke, C., & Long, J. (1999). What choice: A consideration of the level of opportunity for people

with mild and moderate learning disabilities to lead a physically active lifestyle. British Journal of

Learning Disabilities, 27(2), 73–77.

Michie, S., Ashford, S., Sniehotta, F. F., Dombrowski, S. U., Bishop, A., & French, D. P. (2011). A refined taxonomy


behaviours: The CALO-RE taxonomy. Psychology & Health, 26(11), 1479–1498.

Michie, S., Fixsen, D., Grimshaw, J. M., & Eccles, M. P. (2009). Specifying and reporting complex behaviour change

interventions: The need for a scientific method. Implementation Science, 4(40), 1–6.

Michie, S., Jochelson, K., Markham, W. A., & Bridle, C. (2009). Low-income groups and behaviour change

interventions: A review of intervention content, effectiveness and theoretical frameworks. Journal of

Epidemiology & Community Health, 63(8), 610–622.

73

* Mitchell, F., Melville, C., Stalker, K., Matthews, L., McConnachie, A., Murray, H., et al. (2013). Walk well: A

randomised controlled trial of a walking intervention for adults with intellectual disabilities: Study

protocol. BMC Public Health, 13(1), 1–13.


promotion for people with intellectual disabilities: A structured review of literature. Research in






effective techniques in changing obese individuals’ physical activity self-efficacy and behaviour: A


10(29), 1–15.

* Pérez-Cruzado, D., & Cuesta-Vargas, A. I. (2013). Improving adherence physical activity with a smartphone

application based on adults with intellectual disabilities (APPCOID). BMC public health, 13(1), 1173.



* Pett, M., Clark, L., Eldredge, A., Cardell, B., Jordan, K., Chambless, C., et al. (2013). Effecting healthy lifestyle



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Autism and Developmental Disorders, 37(6), 997-1006.

* Podgorski, C. A., Kessler, K., Cacia, B., Peterson, D. R., & Henderson, C. M. (2004). Physical activity intervention

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* Ptomey, L. T., Sullivan, D. K., Lee, J., Goetz, J. R., Gibson, C., & Donnelly, J. E. (2015). The use of technology for

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Van Schijndel-Speet M. (2015, February 11). An evidence-based physical activity and fitness programme for


http://hdl.handle.net/1765/77544.



* Wallén, E. F., Müllerdorf, M., Christensson, K., & Marcus, C. (2013). Eating Patterns among Students with

Intellectual Disabilities after a Multifactorial School Intervention Using the Plate Model. Journal of Policy

and Practice in Intellectual Disabilities, 10(1), 45-53.

* Wallén, E. F., Müllersdorf, M., Christensson, K., & Marcus, C. (2013). A school-based intervention associated

with improvements in cardiometabolic risk profiles in young people with intellectual disabilities. Journal

of Intellectual Disabilities, 17(1), 38-50.




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Robertson, J., Emerson, E., Gregory, N., Hatto, C., Turner, S., Kessissoglou, S., et al. (2000). Lifestyle related risk

factors for poor health in residential settings for people with intellectual disabilities. Research in


* Sailer, A. B., Miltenberger, R. G., Johnson, B., Zetocha, K., Egemo-Helm, K., & Hegstad, H. (2006). Evaluation of

a weight loss treatment program for individuals with mild mental retardation. Child & Family Behaviour

Therapy, 28(2), 15-28.

* Saunders, R. R., Saunders, M. D., Donnelly, J. E., Smith, B. K., Sullivan, D. K., Guilford, B., & Rondon, M. F. (2011).

Evaluation of an approach to weight loss in adults with intellectual or developmental disabilities.

Intellectual and Developmental Disabilities, 49(2), 103-112.

Scott, H. M., & Havercamp, S. M. (2016). Systematic review of health promotion programs focused on behavioral

changes for people with intellectual disability. Intellectual and Developmental Disabilities, 54(1), 63–76.

Sherrington, C., Herbert, R. D., Maher, C. G., & Moseley, A. M. (2000). PEDro. A database of randomized trials

and systematic reviews in physiotherapy. Manual Therapy, 5(4), 223–226.

* Shields, N., Taylor, N. F., & Fernhall, B. (2010). A study protocol of a randomised controlled trial to investigate

if a community based strength training programme improves work task performance in young adults

with Down syndrome. BMC Pediatrics, 10(1), 17.

* Shields, N., Taylor, N. F., Wee, E., Wollersheim, D., O'Shea, S. D., & Fernhall, B. (2013). A community-based

strength training programme increases muscle strength and physical activity in young people with Down

syndrome: A randomised controlled trial. Research in Developmental Disabilities, 34(12), 4385-4394.

* Spanos, D., Hankey, C., Boyle, S., & Melville, C. (2014). Comparing the effectiveness of a multi‐component

weight loss intervention in adults with and without intellectual disabilities. Journal of Human Nutrition

and Dietetics, 27(1), 22-29.


disabilities and obesity: A systematic review of the evidence. Nutrition Journal, 12, 1–16.

* Stanish, H. I., & Temple, V. A. (2012). Efficacy of a peer‐guided exercise programme for adolescents with

intellectual disability. Journal of Applied Research in Intellectual Disabilities, 25(4), 319-328.

Temple, V. A., Frey, G. C., & Stanish, H. I. (2006). Physical activity of adults with mental retardation: Review and

research needs. American Journal of Health Promotion, 21(1), 2–12.

* Temple, V. A., & Stanish, H. I. (2011). The feasibility of using a peer-guided model to enhance participation in

community-based physical activity for youth with intellectual disability. Journal of Intellectual


75

* Thomas, G. R., & Kerr, M. P. (2011). Longitudinal follow-up of weight change in the context of a community

based health promotion programme for adults with an intellectual disability. Journal of Applied Research

in Intellectual Disabilities, 24(4), 381–387.

Tones, K. (2000). Evaluating health promotion: A tale of three errors. Patient Education and Counseling, 39(2),

227–236.

* Ulrich, D. A., Burghardt, A. R., Lloyd, M., Tiernan, C., & Hornyak, J. E. (2011). Physical activity benefits of learning

to ride a two-wheel bicycle for children with Down syndrome: a randomized trial. Physical Therapy,

91(10), 1463-1477.

* Van Schijndel-Speet, M., Evenhuis, H. M., Van Empelen, P., Van Wijck, R., & Echteld, M. A. (2013). Development

and evaluation of a structured programme for promoting physical activity among seniors with

intellectual disabilities: A study protocol for a cluster randomized trial. BMC Public Health, 13(1), 1–11.

* Van Schijndel‐Speet, M., Evenhuis, H. M., van Wijck, R., & Echteld, M. A. (2014). Implementation of a group



Van Schijndel-Speet, M., Evenhuis, H. M., Van Wijck, R., Montfort, K. C. A. G. M., & Echteld, M. A. (2016). A




Van Schijndel-Speet M. (2015, February 11). An evidence-based physical activity and fitness programme for


http://hdl.handle.net/1765/77544.



* Wallén, E. F., Müllerdorf, M., Christensson, K., & Marcus, C. (2013). Eating Patterns among Students with

Intellectual Disabilities after a Multifactorial School Intervention Using the Plate Model. Journal of Policy

and Practice in Intellectual Disabilities, 10(1), 45-53.

* Wallén, E. F., Müllersdorf, M., Christensson, K., & Marcus, C. (2013). A school-based intervention associated

with improvements in cardiometabolic risk profiles in young people with intellectual disabilities. Journal

of Intellectual Disabilities, 17(1), 38-50.




138541-Willems_BNW.indd 75 31-10-19 10:07

76

WHO. (2009). Global health risks: Mortality and burden of disease attributable to selected major risks. Geneva,

Switzerland: World Health Organization.

* Wilhite, B., Biren, G., & Spencer, L. (2012). Fitness intervention for adults with developmental disabilities and

their caregivers. Therapeutic Recreation Journal, 46(4), 245.

Williams, S. L., & French, D. P. (2011). What are the most effective intervention techniques for changing physical

activity self-efficacy and physical activity behaviour—and are they the same? Health Education

Research, 26(2), 308–322.

* Yen, C. F., Lin, J. D., Wu, C. L., & Hu, J. (2012). Promotion of physical exercise in institutionalized people with

intellectual disabilities: age and gender effects. International Journal of Developmental Disabilities,

58(2), 85-94.

77

APPENDICES


Embase.com



NEXT/1 syndrome*) OR 'prader willi'):ab,ti) AND (('lifestyle modification'/exp OR 'diet therapy'/de OR 'diet restriction'/exp

OR 'low calory diet'/exp OR 'low carbohydrate diet'/exp OR 'low fat diet'/exp OR 'weight control'/exp OR 'weight

reduction'/exp OR (((lifestyle* OR life-style OR calor* OR nutrition* OR diet*) NEAR/3 (rehab* OR modif* OR program* OR

restrict* OR therap* OR treat*)) OR (low NEXT/1 (calor* OR carb* OR fat)) OR (weight NEAR/3 (loss OR losing OR reduction

OR control*))):ab,ti) OR (('dietary intake'/de OR lifestyle/exp OR 'sedentary lifestyle'/exp OR 'body mass'/exp OR 'physical

activity'/exp OR exercise/exp OR kinesiotherapy/exp OR 'treadmill exercise'/exp OR obesity/exp OR ('body mass' OR bmi OR

lifestyle OR life-style OR obes* OR overweight* OR (physical* NEAR/3 activ*) OR exercise OR kinesiotherap* OR

kinesitherap* OR swimming OR walking OR jogging OR running OR cycling OR treadmill OR ((diet* OR nutrient*) NEAR/3

intake*)):ab,ti) AND ('education program'/exp OR 'health education'/de OR 'health promotion'/de OR 'nutrition

education'/de OR 'program development'/exp OR 'program evaluation'/exp OR 'health program'/exp OR 'intervention

study'/exp OR 'randomized controlled trial'/exp OR (program* OR promoti* OR educat* OR interven* OR randomi* OR

trial*):ab,ti))) NOT ([Conference Abstract]/lim OR [Letter]/lim OR [Note]/lim OR [Conference Paper]/lim OR [Editorial]/lim)

AND [english]/lim NOT ([animals]/lim NOT [humans]/lim)

Medline (OvidSP)



ADJ syndrome*) OR prader willi).ab,ti.) AND ((diet therapy/ OR diet therapy.xs. OR Caloric Restriction/ OR "Diet, Reducing"/



treat*)) OR (low ADJ (calor* OR carb* OR fat)) OR (weight ADJ3 (loss OR losing OR reduction OR control*))).ab,ti.) OR ((life

style/ OR sedentary lifestyle/ OR body mass index/ OR exp exercise/ OR exp exercise therapy/ OR exp Overweight/ OR (body

mass OR bmi OR lifestyle OR life-style OR obes* OR overweight* OR (physical* ADJ3 activ*) OR exercise OR kinesiotherap*

OR kinesitherap* OR swimming OR walking OR jogging OR running OR cycling OR treadmill OR ((diet* OR nutrient*) ADJ3

intake*)).ab,ti.) AND (health education/ OR "Patient Education as Topic"/ OR exp health promotion/ OR program

development/ OR program evaluation/ OR intervention studies/ OR randomized controlled trial.pt. OR (program* OR

promoti* OR educat* OR interven* OR randomi* OR trial*).ab,ti.))) NOT (letter OR news OR comment OR editorial OR

congresses OR abstracts).pt. AND english.la. NOT (exp animals/ NOT humans/)

Cochrane



(((((lifestyle* OR life-style OR calor* OR nutrition* OR diet*) NEAR/3 (rehab* OR modif* OR program* OR restrict* OR therap*

OR treat*)) OR (low NEXT/1 (calor* OR carb* OR fat)) OR (weight NEAR/3 (loss OR losing OR reduction OR control*))):ab,ti)

OR ((('body mass' OR bmi OR lifestyle OR life-style OR obes* OR overweight* OR (physical* NEAR/3 activ*) OR exercise OR


nutrient*) NEAR/3 intake*)):ab,ti) AND ((program* OR promoti* OR educat* OR interven* OR randomi* OR trial*):ab,ti)) )

138541-Willems_BNW.indd 76 31-10-19 10:07

76

WHO. (2009). Global health risks: Mortality and burden of disease attributable to selected major risks. Geneva,

Switzerland: World Health Organization.

* Wilhite, B., Biren, G., & Spencer, L. (2012). Fitness intervention for adults with developmental disabilities and

their caregivers. Therapeutic Recreation Journal, 46(4), 245.



Research, 26(2), 308–322.

* Yen, C. F., Lin, J. D., Wu, C. L., & Hu, J. (2012). Promotion of physical exercise in institutionalized people with

intellectual disabilities: age and gender effects. International Journal of Developmental Disabilities,

58(2), 85-94.

77

APPENDICES


Embase.com



NEXT/1 syndrome*) OR 'prader willi'):ab,ti) AND (('lifestyle modification'/exp OR 'diet therapy'/de OR 'diet restriction'/exp

OR 'low calory diet'/exp OR 'low carbohydrate diet'/exp OR 'low fat diet'/exp OR 'weight control'/exp OR 'weight

reduction'/exp OR (((lifestyle* OR life-style OR calor* OR nutrition* OR diet*) NEAR/3 (rehab* OR modif* OR program* OR

restrict* OR therap* OR treat*)) OR (low NEXT/1 (calor* OR carb* OR fat)) OR (weight NEAR/3 (loss OR losing OR reduction

OR control*))):ab,ti) OR (('dietary intake'/de OR lifestyle/exp OR 'sedentary lifestyle'/exp OR 'body mass'/exp OR 'physical

activity'/exp OR exercise/exp OR kinesiotherapy/exp OR 'treadmill exercise'/exp OR obesity/exp OR ('body mass' OR bmi OR

lifestyle OR life-style OR obes* OR overweight* OR (physical* NEAR/3 activ*) OR exercise OR kinesiotherap* OR

kinesitherap* OR swimming OR walking OR jogging OR running OR cycling OR treadmill OR ((diet* OR nutrient*) NEAR/3

intake*)):ab,ti) AND ('education program'/exp OR 'health education'/de OR 'health promotion'/de OR 'nutrition

education'/de OR 'program development'/exp OR 'program evaluation'/exp OR 'health program'/exp OR 'intervention

study'/exp OR 'randomized controlled trial'/exp OR (program* OR promoti* OR educat* OR interven* OR randomi* OR

trial*):ab,ti))) NOT ([Conference Abstract]/lim OR [Letter]/lim OR [Note]/lim OR [Conference Paper]/lim OR [Editorial]/lim)

AND [english]/lim NOT ([animals]/lim NOT [humans]/lim)

Medline (OvidSP)



ADJ syndrome*) OR prader willi).ab,ti.) AND ((diet therapy/ OR diet therapy.xs. OR Caloric Restriction/ OR "Diet, Reducing"/



treat*)) OR (low ADJ (calor* OR carb* OR fat)) OR (weight ADJ3 (loss OR losing OR reduction OR control*))).ab,ti.) OR ((life

style/ OR sedentary lifestyle/ OR body mass index/ OR exp exercise/ OR exp exercise therapy/ OR exp Overweight/ OR (body

mass OR bmi OR lifestyle OR life-style OR obes* OR overweight* OR (physical* ADJ3 activ*) OR exercise OR kinesiotherap*

OR kinesitherap* OR swimming OR walking OR jogging OR running OR cycling OR treadmill OR ((diet* OR nutrient*) ADJ3

intake*)).ab,ti.) AND (health education/ OR "Patient Education as Topic"/ OR exp health promotion/ OR program

development/ OR program evaluation/ OR intervention studies/ OR randomized controlled trial.pt. OR (program* OR

promoti* OR educat* OR interven* OR randomi* OR trial*).ab,ti.))) NOT (letter OR news OR comment OR editorial OR

congresses OR abstracts).pt. AND english.la. NOT (exp animals/ NOT humans/)

Cochrane




OR treat*)) OR (low NEXT/1 (calor* OR carb* OR fat)) OR (weight NEAR/3 (loss OR losing OR reduction OR control*))):ab,ti)

OR ((('body mass' OR bmi OR lifestyle OR life-style OR obes* OR overweight* OR (physical* NEAR/3 activ*) OR exercise OR


nutrient*) NEAR/3 intake*)):ab,ti) AND ((program* OR promoti* OR educat* OR interven* OR randomi* OR trial*):ab,ti)) )

138541-Willems_BNW.indd 77 31-10-19 10:07

78

Web of science




OR treat*)) OR (low NEAR/1 (calor* OR carb* OR fat)) OR (weight NEAR/3 (loss OR losing OR reduction OR control*)))) OR

((("body mass" OR bmi OR lifestyle OR life-style OR obes* OR overweight* OR (physical* NEAR/3 activ*) OR exercise OR


nutrient*) NEAR/3 intake*))) AND ((program* OR promoti* OR educat* OR interven* OR randomi* OR trial*)))) NOT

((animal* OR rat OR rats OR mouse OR mice OR murine OR pig OR swine OR porcine) NOT (human* OR patient* OR person*)))

PubMed publisher

(Intellectual Disability[mh] OR Mentally Disabled Persons[mh] OR (mental deficien*[tiab] OR mental handicap*[tiab] OR

mental disab*[tiab] OR mental retard*[tiab] OR mental impair*[tiab] OR mental challenged*[tiab] OR mentally deficien*[tiab]


challenged*[tiab] OR intellectual deficien*[tiab] OR intellectual handicap*[tiab] OR intellectual disab*[tiab] OR intellectual

retard*[tiab] OR intellectual impair*[tiab] OR intellectual challenged*[tiab] OR intellectually deficien*[tiab] OR intellectually


challenged*[tiab] OR developmental disabilit*[tiab] OR developmental handicap*[tiab] OR developmental deficien*[tiab] OR

Down syndrome*[tiab] OR prader willi*[tiab])) AND ((diet therapy[mh] OR diet therapy[sh] OR Caloric Restriction[mh] OR

"Diet, Reducing"[mh] OR "Diet, Carbohydrate-Restricted"[mh] OR "Diet, Fat-Restricted"[mh] OR Weight Loss[mh] OR Weight


(rehab*[tiab] OR modif*[tiab] OR program*[tiab] OR restrict*[tiab] OR therap*[tiab] OR treat*[tiab])) OR low calor*[tiab] OR

low carb*[tiab] OR low fat*[tiab] OR weight loss*[tiab] OR losing weight*[tiab] OR weight reduction*[tiab] OR weight

control*[tiab])) OR ((life style[mh] OR sedentary lifestyle[mh] OR body mass index[mh] OR exercise[mh] OR exercise

therapy[mh] OR Overweight[mh] OR (body mass OR bmi OR lifestyle OR life-style OR obes*[tiab] OR overweight*[tiab] OR

(physical*[tiab] AND activ*[tiab]) OR exercise OR kinesiotherap*[tiab] OR kinesitherap*[tiab] OR swimming OR walking OR

jogging OR running OR cycling OR treadmill OR ((diet*[tiab] OR nutrient*[tiab]) AND intake*[tiab]))) AND (health

education[mh] OR "Patient Education as Topic"[mh] OR health promotion[mh] OR program development[mh] OR program

evaluation[mh] OR intervention studies[mh] OR randomized controlled trial.pt. OR (program*[tiab] OR promoti*[tiab] OR

educat*[tiab] OR interven*[tiab] OR randomi*[tiab] OR trial*[tiab])))) NOT (letter[pt] OR news[pt] OR comment[pt] OR

editorial[pt] OR congresses[pt] OR abstracts[pt]) AND english[la] NOT (animals[mh] NOT humans[mh]) AND publisher[sb]

PsycINFO (OvidSP)



ADJ syndrome*) OR prader willi).ab,ti.) AND ((Weight Control/ OR Dietary Restraint/ OR Weight Loss/ OR Lifestyle Changes/

OR (((lifestyle* OR life-style OR calor* OR nutrition* OR diet*) ADJ3 (rehab* OR modif* OR program* OR restrict* OR therap*

OR treat*)) OR (low ADJ (calor* OR carb* OR fat)) OR (weight ADJ3 (loss OR losing OR reduction OR control*))).ab,ti.) OR

((diets/ OR lifestyle/ OR body mass index/ OR exp exercise/ OR exp Overweight/ OR (body mass OR bmi OR lifestyle OR life-

style OR obes* OR overweight* OR (physical* ADJ3 activ*) OR exercise OR kinesiotherap* OR kinesitherap* OR swimming

OR walking OR jogging OR running OR cycling OR treadmill OR ((diet* OR nutrient*) ADJ3 intake*)).ab,ti.) AND (health

education/ OR "client Education"/ OR exp health promotion/ OR program development/ OR program evaluation/ OR

79

intervention/ OR (program* OR promoti* OR educat* OR interven* OR randomi* OR trial*).ab,ti.))) NOT (letter OR news OR

comment OR editorial OR congresses OR abstracts).pt. AND english.la. NOT (exp animals/ NOT humans/)

Cinahl (ebsco)

(MH "Intellectual Disability+" OR MH "Mentally Disabled Persons+" OR (((mental* OR intellect*) n1 (deficien* OR handicap*

OR disab* OR retard* OR impair* OR challenged)) OR (developmental n1 (disabilit* OR handicap* OR deficien*)) OR (Down*

n1 syndrome*) OR prader willi)) AND ((MH "diet therapy" OR MH "Restricted Diet+" OR MH "Diet, Fat-Restricted+" OR MH

"Weight Loss+" OR MH "Weight Reduction Programs+" OR (((lifestyle* OR life-style OR calor* OR nutrition* OR diet*) N3

(rehab* OR modif* OR program* OR restrict* OR therap* OR treat*)) OR (low n1 (calor* OR carb* OR fat)) OR (weight N3

(loss OR losing OR reduction OR control*)))) OR ((MH "life style+" OR MH "body mass index+" OR MH exercise+ OR MH

"Therapeutic Exercise+" OR MH obesity+ OR (body mass OR bmi OR lifestyle OR life-style OR obes* OR overweight* OR

(physical* N3 activ*) OR exercise OR kinesiotherap* OR kinesitherap* OR swimming OR walking OR jogging OR running OR

cycling OR treadmill OR ((diet* OR nutrient*) N3 intake*))) AND (MH "health education+" OR MH "Patient Education+" OR

MH "health promotion+" OR MH "program development+" OR MH "program evaluation+" OR MH "Experimental Studies+"

OR MH "Randomized Controlled Trials+" OR (program* OR promoti* OR educat* OR interven* OR randomi* OR trial*))))

NOT PT (letter OR news OR comment OR editorial OR congresses OR abstracts) AND LA english NOT (MH animals+ NOT

humans+)

Google scholar

"mental|mentally|intellectual|intellectually

deficiency|deficient|handicap|handicapped|disabled|impaired|retarded|retardation"lifestyle|"life style"|

caloric|diet|"weight loss|reduction"|bmi|obesity|overweight program|promotion|education|intervention

APPENDIX 2 – Data Extraction Form

Author & record info

Data extraction author name

Date of data extraction

Article record nor in Endnote

Title

Authors

Year of publication

GENERAL CHARACTERISTICS

Intervention aimed at behavioural / lifestyle changes in

Physical activity, nutrition, both

Sample characteristics:

Sample Size Number of subjects, (if more groups, nor of subjects for each group)

Age Mean age (if more groups, mean age for each group)

Age group Children (<12), adolescents (12-18), adults (18-45), seniors (45+)

Sex Percentage of females in sample (if more groups, % for each group)

138541-Willems_BNW.indd 78 31-10-19 10:07

78

Web of science




OR treat*)) OR (low NEAR/1 (calor* OR carb* OR fat)) OR (weight NEAR/3 (loss OR losing OR reduction OR control*)))) OR

((("body mass" OR bmi OR lifestyle OR life-style OR obes* OR overweight* OR (physical* NEAR/3 activ*) OR exercise OR


nutrient*) NEAR/3 intake*))) AND ((program* OR promoti* OR educat* OR interven* OR randomi* OR trial*)))) NOT

((animal* OR rat OR rats OR mouse OR mice OR murine OR pig OR swine OR porcine) NOT (human* OR patient* OR person*)))

PubMed publisher

(Intellectual Disability[mh] OR Mentally Disabled Persons[mh] OR (mental deficien*[tiab] OR mental handicap*[tiab] OR

mental disab*[tiab] OR mental retard*[tiab] OR mental impair*[tiab] OR mental challenged*[tiab] OR mentally deficien*[tiab]


challenged*[tiab] OR intellectual deficien*[tiab] OR intellectual handicap*[tiab] OR intellectual disab*[tiab] OR intellectual

retard*[tiab] OR intellectual impair*[tiab] OR intellectual challenged*[tiab] OR intellectually deficien*[tiab] OR intellectually


challenged*[tiab] OR developmental disabilit*[tiab] OR developmental handicap*[tiab] OR developmental deficien*[tiab] OR

Down syndrome*[tiab] OR prader willi*[tiab])) AND ((diet therapy[mh] OR diet therapy[sh] OR Caloric Restriction[mh] OR

"Diet, Reducing"[mh] OR "Diet, Carbohydrate-Restricted"[mh] OR "Diet, Fat-Restricted"[mh] OR Weight Loss[mh] OR Weight


(rehab*[tiab] OR modif*[tiab] OR program*[tiab] OR restrict*[tiab] OR therap*[tiab] OR treat*[tiab])) OR low calor*[tiab] OR

low carb*[tiab] OR low fat*[tiab] OR weight loss*[tiab] OR losing weight*[tiab] OR weight reduction*[tiab] OR weight

control*[tiab])) OR ((life style[mh] OR sedentary lifestyle[mh] OR body mass index[mh] OR exercise[mh] OR exercise

therapy[mh] OR Overweight[mh] OR (body mass OR bmi OR lifestyle OR life-style OR obes*[tiab] OR overweight*[tiab] OR

(physical*[tiab] AND activ*[tiab]) OR exercise OR kinesiotherap*[tiab] OR kinesitherap*[tiab] OR swimming OR walking OR

jogging OR running OR cycling OR treadmill OR ((diet*[tiab] OR nutrient*[tiab]) AND intake*[tiab]))) AND (health

education[mh] OR "Patient Education as Topic"[mh] OR health promotion[mh] OR program development[mh] OR program

evaluation[mh] OR intervention studies[mh] OR randomized controlled trial.pt. OR (program*[tiab] OR promoti*[tiab] OR

educat*[tiab] OR interven*[tiab] OR randomi*[tiab] OR trial*[tiab])))) NOT (letter[pt] OR news[pt] OR comment[pt] OR

editorial[pt] OR congresses[pt] OR abstracts[pt]) AND english[la] NOT (animals[mh] NOT humans[mh]) AND publisher[sb]

PsycINFO (OvidSP)



ADJ syndrome*) OR prader willi).ab,ti.) AND ((Weight Control/ OR Dietary Restraint/ OR Weight Loss/ OR Lifestyle Changes/

OR (((lifestyle* OR life-style OR calor* OR nutrition* OR diet*) ADJ3 (rehab* OR modif* OR program* OR restrict* OR therap*

OR treat*)) OR (low ADJ (calor* OR carb* OR fat)) OR (weight ADJ3 (loss OR losing OR reduction OR control*))).ab,ti.) OR

((diets/ OR lifestyle/ OR body mass index/ OR exp exercise/ OR exp Overweight/ OR (body mass OR bmi OR lifestyle OR life-

style OR obes* OR overweight* OR (physical* ADJ3 activ*) OR exercise OR kinesiotherap* OR kinesitherap* OR swimming

OR walking OR jogging OR running OR cycling OR treadmill OR ((diet* OR nutrient*) ADJ3 intake*)).ab,ti.) AND (health

education/ OR "client Education"/ OR exp health promotion/ OR program development/ OR program evaluation/ OR

79

intervention/ OR (program* OR promoti* OR educat* OR interven* OR randomi* OR trial*).ab,ti.))) NOT (letter OR news OR

comment OR editorial OR congresses OR abstracts).pt. AND english.la. NOT (exp animals/ NOT humans/)

Cinahl (ebsco)

(MH "Intellectual Disability+" OR MH "Mentally Disabled Persons+" OR (((mental* OR intellect*) n1 (deficien* OR handicap*

OR disab* OR retard* OR impair* OR challenged)) OR (developmental n1 (disabilit* OR handicap* OR deficien*)) OR (Down*

n1 syndrome*) OR prader willi)) AND ((MH "diet therapy" OR MH "Restricted Diet+" OR MH "Diet, Fat-Restricted+" OR MH

"Weight Loss+" OR MH "Weight Reduction Programs+" OR (((lifestyle* OR life-style OR calor* OR nutrition* OR diet*) N3

(rehab* OR modif* OR program* OR restrict* OR therap* OR treat*)) OR (low n1 (calor* OR carb* OR fat)) OR (weight N3

(loss OR losing OR reduction OR control*)))) OR ((MH "life style+" OR MH "body mass index+" OR MH exercise+ OR MH

"Therapeutic Exercise+" OR MH obesity+ OR (body mass OR bmi OR lifestyle OR life-style OR obes* OR overweight* OR

(physical* N3 activ*) OR exercise OR kinesiotherap* OR kinesitherap* OR swimming OR walking OR jogging OR running OR

cycling OR treadmill OR ((diet* OR nutrient*) N3 intake*))) AND (MH "health education+" OR MH "Patient Education+" OR

MH "health promotion+" OR MH "program development+" OR MH "program evaluation+" OR MH "Experimental Studies+"

OR MH "Randomized Controlled Trials+" OR (program* OR promoti* OR educat* OR interven* OR randomi* OR trial*))))

NOT PT (letter OR news OR comment OR editorial OR congresses OR abstracts) AND LA english NOT (MH animals+ NOT

humans+)

Google scholar

"mental|mentally|intellectual|intellectually

deficiency|deficient|handicap|handicapped|disabled|impaired|retarded|retardation"lifestyle|"life style"|

caloric|diet|"weight loss|reduction"|bmi|obesity|overweight program|promotion|education|intervention

APPENDIX 2 – Data Extraction Form

Author & record info

Data extraction author name

Date of data extraction

Article record nor in Endnote

Title

Authors

Year of publication

GENERAL CHARACTERISTICS

Intervention aimed at behavioural / lifestyle changes in

Physical activity, nutrition, both

Sample characteristics:

Sample Size Number of subjects, (if more groups, nor of subjects for each group)

Age Mean age (if more groups, mean age for each group)

Age group Children (<12), adolescents (12-18), adults (18-45), seniors (45+)

Sex Percentage of females in sample (if more groups, % for each group)

138541-Willems_BNW.indd 79 31-10-19 10:07

80

Target group describe; e.g. Individuals with ID, Down syndrome, Prader-Willy, developmental disorder, etc.

Level of ID

Borderline (IQ 70-80), mild (IQ 50-69), moderate (IQ 35- 49), severe

(IQ < 35)

Study Design

Randomized controlled trial, non-randomized controlled trial,

controlled before-and-after study, interrupted-time-series study,

historically controlled study, cohort study, cross-sectional study,

case series (uncontrolled longitudinal study), case-control study

Additional remarks on study design

Additional remarks concerning General Characteristics

INTERVENTION CHARACTERISTICS (partly based on Olander et al. 2013) instructions for author

Description intervention (short) the content or elements of the intervention

Intervention delivered by e.g. Family/peers, Nurse, Health practitioner, Researcher….

Outcome measures e.g. physical activity, weight loss, nutrition habits

Setting of intervention e.g. Participants home, Sports centre, Hospital,

Duration of intervention total duration of period in which intervention is given(e.g. 3 weeks, 12 weeks, 3 months)

The frequency of intervention? (e.g., 3 times a week; twice a day)

The intensity of intervention? contact time: duration per session (e.g. 1 hour)

The mode of delivery (e.g., face-to-face or by telephone, web-based)

Theoretical basis mentioned? Theoretical basis explicitly mentioned, some theory mentioned, no

theoretical basis mentioned

Mentioned Theory e.g. Social cognitive theory, self-determination theory….

Additional remarks concerning Intervention Characteristics

PEDRO QUALITY ASSESSMENT.

1 Eligibility criteria were specified. Yes, No

2 Subjects were randomly allocated to groups (in a crossover study, subjects were randomly allocated an order in which treatments were received).

Yes, No

3 Allocation was concealed. Yes, No

4 The groups were similar at baseline regarding the most important prognostic indicators. Yes, No

5 There was blinding of all subjects. Yes, No

6 There was blinding of all therapists who administered the therapy. Yes, No

7 There was blinding of all assessors who measured at least one key outcome. Yes, No

81

8 Measures of at least one key outcome were obtained from more than 85% of the subjects initially allocated to groups.

Yes, No

9 All subjects for whom outcome measures were available received the treatment or control condition as allocated or, where this was not the case, data for at least one key outcome was analysed by “intention to treat”.

Yes, No

10 The results of between-group statistical comparisons are reported for at least one key outcome. Yes, No

11 The study provides both point measures and measures of variability for at least one key outcome. Yes, No

BEHAVIOR CHANGE TECHNIQUES

(based on CALORE Taxonomy for behavioural change Techniques (Michie et al. 2011))

1 Provide information on consequences of behaviour in general

2 Provide information on consequences of behaviour to the individual

3 Provide information about others' approval

4 Provide normative information about others' behaviour

5 Goal setting (behaviour)

6 Goal setting (outcome)

7 Action planning

8 Barrier identification/problem solving

9 Set graded tasks

10 Prompt review of behavioural goals

11 Prompt review of outcome goals

12 Prompt rewards contingent on effort or progress towards behaviour

13 Provide rewards contingent on successful behaviour

14 Shaping

15 Prompting generalization of a target behaviour

16 Prompt self-monitoring of behaviour

17 Prompt self-monitoring of behavioural outcome

18 Prompting focus on past success

19 Provide feedback on performance

20 Provide information on where and when to perform behaviour

21 Provide instruction on how to perform the behaviour

22 Model/demonstrate the behaviour

23 Teach to use prompts/cues

24 Environmental restructuring

25 Agree behavioural contract

26 Prompt practice

138541-Willems_BNW.indd 80 31-10-19 10:07

80

Target group describe; e.g. Individuals with ID, Down syndrome, Prader-Willy, developmental disorder, etc.

Level of ID

Borderline (IQ 70-80), mild (IQ 50-69), moderate (IQ 35- 49), severe

(IQ < 35)

Study Design

Randomized controlled trial, non-randomized controlled trial,

controlled before-and-after study, interrupted-time-series study,

historically controlled study, cohort study, cross-sectional study,

case series (uncontrolled longitudinal study), case-control study

Additional remarks on study design

Additional remarks concerning General Characteristics

INTERVENTION CHARACTERISTICS (partly based on Olander et al. 2013) instructions for author

Description intervention (short) the content or elements of the intervention

Intervention delivered by e.g. Family/peers, Nurse, Health practitioner, Researcher….

Outcome measures e.g. physical activity, weight loss, nutrition habits

Setting of intervention e.g. Participants home, Sports centre, Hospital,

Duration of intervention total duration of period in which intervention is given(e.g. 3 weeks, 12 weeks, 3 months)

The frequency of intervention? (e.g., 3 times a week; twice a day)

The intensity of intervention? contact time: duration per session (e.g. 1 hour)

The mode of delivery (e.g., face-to-face or by telephone, web-based)

Theoretical basis mentioned? Theoretical basis explicitly mentioned, some theory mentioned, no

theoretical basis mentioned

Mentioned Theory e.g. Social cognitive theory, self-determination theory….

Additional remarks concerning Intervention Characteristics

PEDRO QUALITY ASSESSMENT.

1 Eligibility criteria were specified. Yes, No

2 Subjects were randomly allocated to groups (in a crossover study, subjects were randomly allocated an order in which treatments were received).

Yes, No

3 Allocation was concealed. Yes, No

4 The groups were similar at baseline regarding the most important prognostic indicators. Yes, No

5 There was blinding of all subjects. Yes, No

6 There was blinding of all therapists who administered the therapy. Yes, No

7 There was blinding of all assessors who measured at least one key outcome. Yes, No

81

8 Measures of at least one key outcome were obtained from more than 85% of the subjects initially allocated to groups.

Yes, No

9 All subjects for whom outcome measures were available received the treatment or control condition as allocated or, where this was not the case, data for at least one key outcome was analysed by “intention to treat”.

Yes, No

10 The results of between-group statistical comparisons are reported for at least one key outcome. Yes, No

11 The study provides both point measures and measures of variability for at least one key outcome. Yes, No

BEHAVIOR CHANGE TECHNIQUES

(based on CALORE Taxonomy for behavioural change Techniques (Michie et al. 2011))

1 Provide information on consequences of behaviour in general

2 Provide information on consequences of behaviour to the individual

3 Provide information about others' approval

4 Provide normative information about others' behaviour

5 Goal setting (behaviour)

6 Goal setting (outcome)

7 Action planning

8 Barrier identification/problem solving

9 Set graded tasks

10 Prompt review of behavioural goals

11 Prompt review of outcome goals

12 Prompt rewards contingent on effort or progress towards behaviour

13 Provide rewards contingent on successful behaviour

14 Shaping

15 Prompting generalization of a target behaviour

16 Prompt self-monitoring of behaviour

17 Prompt self-monitoring of behavioural outcome

18 Prompting focus on past success

19 Provide feedback on performance

20 Provide information on where and when to perform behaviour

21 Provide instruction on how to perform the behaviour

22 Model/demonstrate the behaviour

23 Teach to use prompts/cues

24 Environmental restructuring

25 Agree behavioural contract

26 Prompt practice

138541-Willems_BNW.indd 81 31-10-19 10:07

82

27 Use of follow-up prompts

28 Facilitate social comparison

29 Plan social support/social change

30 Prompt identification as role model/position advocate

31 Prompt anticipated regret

32 Fear arousal

33 Prompt self-talk

34 Prompt use of imagery

35 Relapse prevention/coping planning

36 Stress management/emotional control training

37 Motivational interviewing

38 Time management

39 General communication skills training

40 Stimulate anticipation of future rewards

83

SUPP

LEM

ENTA

L TA

BLE

1 –

Gen

eral

cha

ract

erist

ics

7 The

se re

sults

are

com

bine

d w

ith th

e pr

oces

s eva

luat

ion

pape

r fro

m B

odde

et a

l. (2

012)

des

crib

ing

the

sam

e st

udy.

8 T

hese

resu

lts a

re co

mbi

ned

with

the

prot

ocol

pap

er fr

om S

hiel

ds e

t al.

(201

0) d

escr

ibin

g th

e sa

me

stud

y.

9 The

se re

sults

are

com

bine

d w

ith th

e pr

otoc

ol p

aper

from

Van

Sch

ijnde

l-Spe

et e

t al.

(201

3) d

escr

ibin

g th

e sa

me

stud

y.

Stud

y Ye

ar

Setti

ng

Popu

latio

n N

Age

(M)

Leve

l of I

D Se

x (%

F)

Inte

rven

tions

aim

ed a

t phy

sical

act

ivity

(15)

Podg

orsk

i 20

04

Day

habi

litat

ion

sett

ing

Olde

r adu

lts w

ith ID

12

40

-80+

Al

l lev

els.

Mild

= 40

%; M

oder

ate=

13.3

%;

Seve

re=

20.0

%; P

rofo

und=

26.7

%

46.7

Jone

s 20

07

Resid

entia

l fac

ility

Pe

ople

with

ID

8 41

.3 (S

D= 6

.5)

Seve

re (1

00%

) Un

know

n

Pite

tti

2007

Gy

mna

sium

Ad

oles

cent

s/yo

uth

with

se

vere

dev

elop

men

tal

disa

bilit

ies

10

17 (1

4-19

yea

rs,

SD=

1.9)

M

oder

ate-

seve

re. M

ild I=

10%

; Sev

ere=

60%

; ID

unc

lass

ified

= 20

%; A

sper

ger

synd

rom

e=10

%

40

Gelle

r 20

09

Com

mun

ity h

ealth

cent

re

Over

wei

ght a

dults

with

de

velo

pmen

tal d

elay

43

42

.6

All l

evel

s 58

.1

Tem

ple

2011

YM

CA fi

tnes

s cen

tre

Yout

h w

ith ID

in th

e co

mm

unity

20

17

.8

(15-

21

year

s, SD

= 1.

6)

Mild

(100

%)

50

Thom

as

2011

Un

know

n Ad

ults

with

ID

191

42 (1

9-72

year

s)

Unkn

own

38.2

Ulric

h 20

11

Trai

ning

facil

ity

Child

ren

(8-1

5 ye

ars)

w

ith D

own

Synd

rom

e 46

12

.2 (8

-15)

Un

know

n 56

.5

Bodd

e7 20

12

Agen

cies t

hat s

erve

adu

lts

with

ID

Ambu

lato

ry a

dults

with

ID

42

38

.8

(19-

62

year

s)

Mild

-mod

erat

e 50

Stan

ish

2012

YM

CA B

ranc

hes

Adol

esce

nts w

ith ID

20

17

.8

(15-

21

year

s, SD

= 1.

6)

Mild

-mod

erat

e 50

Yen

2012

In

stitu

tion

Adul

ts w

ith ID

, liv

ing

in

inst

itutio

n 13

5 33

.7

(19-

67

year

s, SD

= 10

.0)

All l

evel

s. M

ild=

3.6%

; Mod

erat

e= 3

0.4%

; Se

vere

=31

.9%

; Pro

foun

d= 3

4.15

33

.3

Mitc

hell

2013

Pa

rtici

pant

’s ho

me

Adul

ts w

ith ID

Pr

otoc

ol

Prot

ocol

Al

l lev

els

Prot

ocol

Pere

z-Cr

uzad

o 20

13

Occu

patio

nal c

entr

e Pe

ople

with

ID

Prot

ocol

Pr

otoc

ol

Mild

-mod

erat

e Pr

otoc

ol

Shie

lds8

2013

Gy

mna

sium

Ad

oles

cent

s with

Dow

n Sy

ndro

me

68

17.9

(1

4-22

ye

ars,

SD=

2.6)

M

ild-m

oder

ate.

Mild

=50%

; Mod

erat

e=50

%

44

Lant

e 20

14

Loca

l com

mun

ity se

tting

s Ad

ults

with

ID

90

18-5

5 ye

ars

Unkn

own

Unkn

own

Van

Schi

jnde

l-Sp

eet9

2014

Da

y ac

tivity

cent

re

Olde

r ind

ivid

uals

with

ID

14

6 44

+ ye

ars

Mild

-mod

erat

e Un

know

n

Inte

rven

tions

aim

ed a

t nut

ritio

n (3

)

138541-Willems_BNW.indd 82 31-10-19 10:07

83

82

27 Use of follow-up prompts

28 Facilitate social comparison

29 Plan social support/social change

30 Prompt identification as role model/position advocate

31 Prompt anticipated regret

32 Fear arousal

33 Prompt self-talk

34 Prompt use of imagery

35 Relapse prevention/coping planning

36 Stress management/emotional control training

37 Motivational interviewing

38 Time management

39 General communication skills training

40 Stimulate anticipation of future rewards

83

SUPP

LEM

ENTA

L TA

BLE

1 –

Gen

eral

cha

ract

erist

ics

7 The

se re

sults

are

com

bine

d w

ith th

e pr

oces

s eva

luat

ion

pape

r fro

m B

odde

et a

l. (2

012)

des

crib

ing

the

sam

e st

udy.

8 T

hese

resu

lts a

re co

mbi

ned

with

the

prot

ocol

pap

er fr

om S

hiel

ds e

t al.

(201

0) d

escr

ibin

g th

e sa

me

stud

y.

9 The

se re

sults

are

com

bine

d w

ith th

e pr

otoc

ol p

aper

from

Van

Sch

ijnde

l-Spe

et e

t al.

(201

3) d

escr

ibin

g th

e sa

me

stud

y.

Stud

y Ye

ar

Setti

ng

Popu

latio

n N

Age

(M)

Leve

l of I

D Se

x (%

F)

Inte

rven

tions

aim

ed a

t phy

sical

act

ivity

(15)

Podg

orsk

i 20

04

Day

habi

litat

ion

sett

ing

Olde

r adu

lts w

ith ID

12

40

-80+

Al

l lev

els.

Mild

= 40

%; M

oder

ate=

13.3

%;

Seve

re=

20.0

%; P

rofo

und=

26.7

%

46.7

Jone

s 20

07

Resid

entia

l fac

ility

Pe

ople

with

ID

8 41

.3 (S

D= 6

.5)

Seve

re (1

00%

) Un

know

n

Pite

tti

2007

Gy

mna

sium

Ad

oles

cent

s/yo

uth

with

se

vere

dev

elop

men

tal

disa

bilit

ies

10

17 (1

4-19

yea

rs,

SD=

1.9)

M

oder

ate-

seve

re. M

ild I=

10%

; Sev

ere=

60%

; ID

unc

lass

ified

= 20

%; A

sper

ger

synd

rom

e=10

%

40

Gelle

r 20

09

Com

mun

ity h

ealth

cent

re

Over

wei

ght a

dults

with

de

velo

pmen

tal d

elay

43

42

.6

All l

evel

s 58

.1

Tem

ple

2011

YM

CA fi

tnes

s cen

tre

Yout

h w

ith ID

in th

e co

mm

unity

20

17

.8

(15-

21

year

s, SD

= 1.

6)

Mild

(100

%)

50

Thom

as

2011

Un

know

n Ad

ults

with

ID

191

42 (1

9-72

year

s)

Unkn

own

38.2

Ulric

h 20

11

Trai

ning

facil

ity

Child

ren

(8-1

5 ye

ars)

w

ith D

own

Synd

rom

e 46

12

.2 (8

-15)

Un

know

n 56

.5

Bodd

e7 20

12

Agen

cies t

hat s

erve

adu

lts

with

ID

Ambu

lato

ry a

dults

with

ID

42

38

.8

(19-

62

year

s)

Mild

-mod

erat

e 50

Stan

ish

2012

YM

CA B

ranc

hes

Adol

esce

nts w

ith ID

20

17

.8

(15-

21

year

s, SD

= 1.

6)

Mild

-mod

erat

e 50

Yen

2012

In

stitu

tion

Adul

ts w

ith ID

, liv

ing

in

inst

itutio

n 13

5 33

.7

(19-

67

year

s, SD

= 10

.0)

All l

evel

s. M

ild=

3.6%

; Mod

erat

e= 3

0.4%

; Se

vere

=31

.9%

; Pro

foun

d= 3

4.15

33

.3

Mitc

hell

2013

Pa

rtici

pant

’s ho

me

Adul

ts w

ith ID

Pr

otoc

ol

Prot

ocol

Al

l lev

els

Prot

ocol

Pere

z-Cr

uzad

o 20

13

Occu

patio

nal c

entr

e Pe

ople

with

ID

Prot

ocol

Pr

otoc

ol

Mild

-mod

erat

e Pr

otoc

ol

Shie

lds8

2013

Gy

mna

sium

Ad

oles

cent

s with

Dow

n Sy

ndro

me

68

17.9

(1

4-22

ye

ars,

SD=

2.6)

M

ild-m

oder

ate.

Mild

=50%

; Mod

erat

e=50

%

44

Lant

e 20

14

Loca

l com

mun

ity se

tting

s Ad

ults

with

ID

90

18-5

5 ye

ars

Unkn

own

Unkn

own

Van

Schi

jnde

l-Sp

eet9

2014

Da

y ac

tivity

cent

re

Olde

r ind

ivid

uals

with

ID

14

6 44

+ ye

ars

Mild

-mod

erat

e Un

know

n

Inte

rven

tions

aim

ed a

t nut

ritio

n (3

)

138541-Willems_BNW.indd 83 31-10-19 10:07

84

84

Bart

ley

2011

Da

y ce

ntre

Pe

ople

with

ID

12

40.3

(2

5-63

ye

ars,

SD=

11.4

) Un

know

n 67

Wal

lén

2013

Up

per s

econ

dary

scho

ol

Stud

ents

with

ID

89

19 (1

6-21

yea

rs,

SD=1

) M

ild-m

oder

ate

49

Hubb

ard

2014

Pr

ivat

e sp

ecia

lized

re

siden

tial s

choo

l St

uden

ts w

ith I/

DD

Unkn

own

9-22

yea

rs

Unkn

own

Unkn

own

Inte

rven

tions

aim

ed a

t bot

h ph

ysica

l act

ivity

and

nut

ritio

n (2

3)

Clup

hf

2001

Sh

elte

red

wor

ksho

p Ad

ults

with

ID

27

38.0

M

ild (1

00%

) 44

.4

M

arsh

all

2003

Se

vera

l loc

atio

ns

Over

wei

ght p

eopl

e w

ith

ID

20

10

ye

ars

and

over

Un

know

n Un

know

n

Ewin

g 20

04

Prim

ary

care

setti

ng

Indi

vidu

als w

ith ID

92

39

.7 (S

D=11

.5)

All l

evel

s 54

.4

Brad

ley

2005

Un

know

n Ov

erw

eigh

t wom

en

with

ID

9 Un

know

n Un

know

n 10

0

Chap

man

20

05

Part

icipa

nt’s

hom

e In

divi

dual

s with

ID

72

40.7

(1

9-70

ye

ars)

Un

know

n 43

Man

n 20

06

Com

mun

ity d

isabi

lity

serv

ice

Over

wei

ght a

dults

with

ID

19

2 38

.6 (S

D =

11.5

) M

ild-m

oder

ate

66.7

Saile

r 20

06

Hum

an se

rvice

cent

re

Obes

e in

divi

dual

s with

ID

6

46 (3

4-54

yea

rs,

SD=

7.7)

M

ild (1

00%

) 67

Chap

man

2008

Pa

rtici

pant

’s ho

me

Adul

ts w

ith ID

73

46

.9

Unkn

own

41

Bazz

ano

2009

Co

mm

unity

loca

tions

Ov

erw

eigh

t adu

lts w

ith

ID

44

18–5

9 ye

ars

Unkn

own

61.4

Mel

ville

20

11

Part

icipa

nts h

ome

Adul

ts w

ith ID

and

ob

esity

54

45

.3

(23–

71

year

s, SD

= 12

.01)

All l

evel

s 59

.3

Saun

ders

20

11

Unkn

own

Over

wei

ght a

dults

with

ID

73

18

-62

year

s Un

know

n 59

Case

y 20

12

25m

poo

l Ad

ults

with

ID

8 41

(21-

57 y

ears

, SD

= 13

.7)

Unkn

own

25

McD

erm

ott

2012

Lo

cal d

isabi

lity

agen

cy

serv

ice fa

ciliti

es

Indi

vidu

als w

ith ID

44

3 38

.8

(19-

70

year

s)

Mild

-mod

erat

e 50

.3

Wilh

ite

2012

Un

know

n Ad

ults

with

IDD

16

40.4

(2

2-69

ye

ars)

M

ild-m

oder

ate

75

Beek

en

2013

Da

y ce

ntre

s Ov

erw

eigh

t per

sons

w

ith ID

Pr

otoc

ol

Prot

ocol

M

ild-m

oder

ate

Prot

ocol

85

SUPP

LEM

ENTA

L TA

BLE

2 –

Inte

rven

tion

char

acte

ristic

s

10 T

hese

resu

lts a

re co

mbi

ned

with

the

prot

ocol

pap

er fr

om E

linde

r et a

l. (2

010)

des

crib

ing

the

sam

e st

udy.

11

The

se re

sults

are

com

bine

d w

ith th

e pr

oces

s eva

luat

ion

pape

r fro

m B

odde

et a

l. (2

012)

des

crib

ing

the

sam

e st

udy.

Berg

stro

m10

20

13

Resid

ence

Ad

ults

with

ID li

ving

in

resid

ence

s 12

9 37

.8

(20-

66

year

s)

Mild

-mod

erat

e 56

.9

Cu

rtin

20

13

Unkn

own

Adol

esce

nts a

nd y

oung

ad

ults

with

dow

n sy

ndro

me

21

20.5

(1

3-26

ye

ars,

SD=

3.2)

M

ild-m

oder

ate

81.0

Donn

elly

20

13

Part

icipa

nt’s

hom

e Ov

erw

eigh

t adu

lts w

ith

ID a

nd D

D 15

0 18

ye

ars

and

over

M

ild-m

oder

ate

Desig

n/ra

tiona

le

Mar

ks

2013

Co

mm

unity

-bas

ed

orga

nisa

tions

Ad

ults

with

ID

67

45.2

(3

1-64

ye

ars,

SD=7

.6)

Mild

-mod

erat

e 52

Pett

20

13

Recr

eatio

n ce

ntre

Ob

ese

hom

e dw

ellin

g yo

ung

adul

ts w

ith ID

30

24

.2

(18-

33

year

s, SD

= 4.

2)

Mild

-mod

erat

e 60

Wal

lén

2013

Up

per s

econ

dary

scho

ol

Stud

ents

with

ID

27

20.7

(19

.2-2

1.8

year

s)

Mild

-mod

erat

e 33

.3

Span

os

2014

Pa

rtici

pant

’s ho

me

Adul

ts w

ith ID

52

51

(26-

73 ye

ars)

M

ild, m

oder

ate,

seve

re

60.9

Ptom

ey

2015

Pa

rtici

pant

s hom

e Ad

oles

cent

s with

IDD

with

ove

rwei

ght

22

14.9

(1

1-18

ye

ars,

SD=

2.2)

M

ild-m

oder

ate.

Mild

= 60

%; M

oder

ate=

40%

45

Stud

y Ye

ar

Desig

n Th

eore

tical

fram

ewor

k De

liver

y Nu

mbe

r/

freq

uenc

y pe

r w

eek

Inte

rven

tion

dura

tion

(wee

ks)

Follo

w-u

p

Inte

rven

tions

aim

ed a

t phy

sical

act

ivity

(15)

Podg

orsk

i 20

04

Case

serie

s No

ne

Face

-to-fa

ce, g

roup

4

12

9 m

onth

s

Jone

s 20

07

Case

serie

s No

ne

Face

-to-fa

ce

3-5

16

3 m

onth

s

Pite

tti

2007

No

n-RC

T No

ne

face

-to-fa

ce, g

roup

3

9 m

onth

s No

ne

Gelle

r 20

09

Case

serie

s No

ne

Face

-to-fa

ce, g

roup

and

in

divi

dual

ly

2 13

,5 m

onth

s No

ne

Tem

ple

2011

Ca

se se

ries

None

Fa

ce-to

-face

, gro

up

2

15

None

Thom

as

2011

Ca

se se

ries

None

lo

gboo

ks

Unkn

own

24 m

onth

s No

ne

Ulric

h 20

11

RCT

Dyna

mic

syst

ems t

heor

y Fa

ce-to

-face

5

cons

ecut

ive

days

5

cons

ecut

ive

days

12

mon

ths

Bodd

e11

2012

Ca

se se

ries

Theo

ry o

f pla

nned

beh

avio

ur

Face

-to-fa

ce, g

roup

8

sess

ions

in to

tal

Unkn

own

None

138541-Willems_BNW.indd 84 31-10-19 10:07

85

85

SUPP

LEM

ENTA

L TA

BLE

2 –

Inte

rven

tion

char

acte

ristic

s

10 T

hese

resu

lts a

re co

mbi

ned

with

the

prot

ocol

pap

er fr

om E

linde

r et a

l. (2

010)

des

crib

ing

the

sam

e st

udy.

11

The

se re

sults

are

com

bine

d w

ith th

e pr

oces

s eva

luat

ion

pape

r fro

m B

odde

et a

l. (2

012)

des

crib

ing

the

sam

e st

udy.

Berg

stro

m10

20

13

Resid

ence

Ad

ults

with

ID li

ving

in

resid

ence

s 12

9 37

.8

(20-

66

year

s)

Mild

-mod

erat

e 56

.9

Cu

rtin

20

13

Unkn

own

Adol

esce

nts a

nd y

oung

ad

ults

with

dow

n sy

ndro

me

21

20.5

(1

3-26

ye

ars,

SD=

3.2)

M

ild-m

oder

ate

81.0

Donn

elly

20

13

Part

icipa

nt’s

hom

e Ov

erw

eigh

t adu

lts w

ith

ID a

nd D

D 15

0 18

ye

ars

and

over

M

ild-m

oder

ate

Desig

n/ra

tiona

le

Mar

ks

2013

Co

mm

unity

-bas

ed

orga

nisa

tions

Ad

ults

with

ID

67

45.2

(3

1-64

ye

ars,

SD=7

.6)

Mild

-mod

erat

e 52

Pett

20

13

Recr

eatio

n ce

ntre

Ob

ese

hom

e dw

ellin

g yo

ung

adul

ts w

ith ID

30

24

.2

(18-

33

year

s, SD

= 4.

2)

Mild

-mod

erat

e 60

Wal

lén

2013

Up

per s

econ

dary

scho

ol

Stud

ents

with

ID

27

20.7

(19

.2-2

1.8

year

s)

Mild

-mod

erat

e 33

.3

Span

os

2014

Pa

rtici

pant

’s ho

me

Adul

ts w

ith ID

52

51

(26-

73 ye

ars)

M

ild, m

oder

ate,

seve

re

60.9

Ptom

ey

2015

Pa

rtici

pant

s hom

e Ad

oles

cent

s with

IDD

with

ove

rwei

ght

22

14.9

(1

1-18

ye

ars,

SD=

2.2)

M

ild-m

oder

ate.

Mild

= 60

%; M

oder

ate=

40%

45

Stud

y Ye

ar

Desig

n Th

eore

tical

fram

ewor

k De

liver

y Nu

mbe

r/

freq

uenc

y pe

r w

eek

Inte

rven

tion

dura

tion

(wee

ks)

Follo

w-u

p

Inte

rven

tions

aim

ed a

t phy

sical

act

ivity

(15)

Podg

orsk

i 20

04

Case

serie

s No

ne

Face

-to-fa

ce, g

roup

4

12

9 m

onth

s

Jone

s 20

07

Case

serie

s No

ne

Face

-to-fa

ce

3-5

16

3 m

onth

s

Pite

tti

2007

No

n-RC

T No

ne

face

-to-fa

ce, g

roup

3

9 m

onth

s No

ne

Gelle

r 20

09

Case

serie

s No

ne

Face

-to-fa

ce, g

roup

and

in

divi

dual

ly

2 13

,5 m

onth

s No

ne

Tem

ple

2011

Ca

se se

ries

None

Fa

ce-to

-face

, gro

up

2

15

None

Thom

as

2011

Ca

se se

ries

None

lo

gboo

ks

Unkn

own

24 m

onth

s No

ne

Ulric

h 20

11

RCT

Dyna

mic

syst

ems t

heor

y Fa

ce-to

-face

5

cons

ecut

ive

days

5

cons

ecut

ive

days

12

mon

ths

Bodd

e11

2012

Ca

se se

ries

Theo

ry o

f pla

nned

beh

avio

ur

Face

-to-fa

ce, g

roup

8

sess

ions

in to

tal

Unkn

own

None

138541-Willems_BNW.indd 85 31-10-19 10:07

86

86

12 T

hese

resu

lts a

re co

mbi

ned

with

the

prot

ocol

pap

er fr

om S

hiel

ds e

t al.

(201

0) d

escr

ibin

g th

e sa

me

stud

y.

13 T

hese

resu

lts a

re co

mbi

ned

with

the

prot

ocol

pap

er fr

om V

an S

chijn

del-S

peet

et a

l. (2

013)

des

crib

ing

the

sam

e st

udy.

Stan

ish

2012

Ca

se se

ries

None

Fa

ce-to

-face

with

pee

r pa

rtne

r 2

15

None

Yen

2012

Ca

se se

ries

None

Fa

ce-to

-face

4

9 m

onth

s No

ne

Mitc

hell

2013

RC

T So

cial c

ogni

tive

theo

ry, B

ehav

iour

ch

ange

tech

niqu

es, t

rans

theo

retic

al

mod

el

Face

-to-fa

ce, i

ndiv

idua

lly

3 tim

es

12

3 m

onth

s

Pere

z-Cr

uzad

o 20

13

RCT

None

Fa

ce-to

-face

, gro

up

2 26

10

wee

ks

Shie

lds12

20

13

RCT

None

Fa

ce-to

-face

, gro

up

2 10

14

wee

ks

Lant

e 20

14

RCT

None

Fa

ce-to

-face

Gr

oup

1: 1

gr

oup

2: 3

12

6

mon

ths

Van

Schi

jnde

l13

2014

RC

T Be

havi

our c

hang

e te

chni

ques

, Th

eory

of p

lann

ed b

ehav

iour

, Soc

ial

cogn

itive

theo

ry

Face

-to-fa

ce

3

32

6 m

onth

s

Inte

rven

tions

aim

ed a

t nut

ritio

n (3

)

Bart

ley

2011

Ca

se se

ries

None

Fa

ce-to

-face

, gro

up

0,5

(onc

e in

2

wee

ks)

12 m

onth

s No

ne

Wal

lén

2013

Co

ntro

lled

befo

re-a

nd-a

fter

stud

y

None

Fa

ce-to

-face

5

6 m

onth

s No

ne

Hubb

ard

2014

Ca

se se

ries

None

Fa

ce-to

-face

Un

know

n Un

know

n No

ne

Inte

rven

tions

aim

ed a

t bot

h ph

ysica

l act

ivity

and

nut

ritio

n (2

3)

Clup

hf

2001

No

n-RC

T No

ne

Face

-to-fa

ce, g

roup

3

12

6 w

eeks

Mar

shal

l 20

03

Case

serie

s No

ne

Face

-to-fa

ce

1 6-

8 No

ne

Ewin

g 20

04

Non-

RCT

None

Fa

ce-to

-face

, gro

up

1 8

None

Brad

ley

2005

Ca

se se

ries

None

Fa

ce-to

-face

, gro

up

1 12

mon

ths

None

Chap

man

20

05

Cont

rolle

d be

fore

-and

-afte

r st

udy

None

Fa

ce-to

-face

, ind

ivid

ually

Un

know

n 12

mon

ths

None

Man

n 20

06

Case

serie

s No

ne

Face

-to-fa

ce, g

roup

1

9 No

ne

Saile

r 20

06

Case

serie

s No

ne

Face

-to-fa

ce, g

roup

1

10

2, 3

and

4

wee

ks

87

14 T

hese

resu

lts a

re co

mbi

ned

with

the

prot

ocol

pap

er fr

om E

linde

r et a

l. (2

010)

des

crib

ing

the

sam

e st

udy.

Chap

man

2008

Co

ntro

lled

befo

re-a

nd-a

fter

stud

y

None

Fa

ce-to

-face

4-

5 pe

r yea

r 18

mon

ths

4,5

year

s

Bazz

ano

2009

Ca

se se

ries

Socia

l cog

nitiv

e th

eory

Fa

ce-to

-face

2

7 m

onth

s No

ne

Mel

ville

20

11

Case

serie

s No

ne

Face

-to-fa

ce, i

ndiv

idua

lly

1 in

2-3

wee

ks

24

None

Saun

ders

20

11

Case

serie

s No

ne

Face

-to-fa

ce, i

ndiv

idua

lly

Mon

thly

6

mon

ths

6 m

onth

s

Case

y 20

12

Case

serie

s No

ne

Face

-to-fa

ce

4 13

No

ne

McD

erm

ott

2012

RC

T So

cial c

ogni

tive

theo

ry

Face

-to-fa

ce, g

roup

1

8 10

mon

ths

Wilh

ite

2012

Ca

se se

ries

None

Fa

ce-to

-face

, ind

ivid

ually

3

12

None

Beek

en

2013

RC

T So

cial c

ogni

tive

theo

ry, c

ontr

ol

theo

ry, B

ehav

iour

chan

ge

tech

niqu

es

Face

-to-fa

ce, g

roup

1

12

3 m

onth

s

Berg

stro

m14

20

13

RCT

Socia

l cog

nitiv

e th

eory

Fa

ce-to

-face

, gro

up

10 se

ssio

ns

12-1

6 m

onth

s No

ne

Curt

in

2013

RC

T No

ne

Face

-to-fa

ce, g

roup

1

6 m

onth

s 6

mon

ths

Donn

elly

20

13

RCT

None

Fa

ce-to

-face

5-

7 18

No

ne

Mar

ks

2013

RC

T Tr

anst

heor

etica

l mod

el, s

ocia

l co

gniti

ve th

eory

Fa

ce-to

-face

3

12

None

Pett

2013

Ca

se se

ries

Tran

sthe

oret

ical m

odel

, soc

ial

cogn

itive

theo

ry, B

ronf

enbr

enne

r ec

olog

ical t

heor

y of

hum

an

deve

lopm

ent

Face

-to-fa

ce

2 12

3

mon

ths

Wal

lén

2013

Hi

stor

ically

co

ntro

lled

stud

y No

ne

Face

-to-fa

ce

2-3

24 m

onth

s No

ne

Span

os

2014

Ca

se se

ries

None

Fa

ce-to

-face

, ind

ivid

ually

9

sess

ions

16

No

ne

Ptom

ey

2015

RC

T No

ne

Face

-to-fa

ce

1 8

None

138541-Willems_BNW.indd 86 31-10-19 10:07

87

87

14 T

hese

resu

lts a

re co

mbi

ned

with

the

prot

ocol

pap

er fr

om E

linde

r et a

l. (2

010)

des

crib

ing

the

sam

e st

udy.

Chap

man

2008

Co

ntro

lled

befo

re-a

nd-a

fter

stud

y

None

Fa

ce-to

-face

4-

5 pe

r yea

r 18

mon

ths

4,5

year

s

Bazz

ano

2009

Ca

se se

ries

Socia

l cog

nitiv

e th

eory

Fa

ce-to

-face

2

7 m

onth

s No

ne

Mel

ville

20

11

Case

serie

s No

ne

Face

-to-fa

ce, i

ndiv

idua

lly

1 in

2-3

wee

ks

24

None

Saun

ders

20

11

Case

serie

s No

ne

Face

-to-fa

ce, i

ndiv

idua

lly

Mon

thly

6

mon

ths

6 m

onth

s

Case

y 20

12

Case

serie

s No

ne

Face

-to-fa

ce

4 13

No

ne

McD

erm

ott

2012

RC

T So

cial c

ogni

tive

theo

ry

Face

-to-fa

ce, g

roup

1

8 10

mon

ths

Wilh

ite

2012

Ca

se se

ries

None

Fa

ce-to

-face

, ind

ivid

ually

3

12

None

Beek

en

2013

RC

T So

cial c

ogni

tive

theo

ry, c

ontr

ol

theo

ry, B

ehav

iour

chan

ge

tech

niqu

es

Face

-to-fa

ce, g

roup

1

12

3 m

onth

s

Berg

stro

m14

20

13

RCT

Socia

l cog

nitiv

e th

eory

Fa

ce-to

-face

, gro

up

10 se

ssio

ns

12-1

6 m

onth

s No

ne

Curt

in

2013

RC

T No

ne

Face

-to-fa

ce, g

roup

1

6 m

onth

s 6

mon

ths

Donn

elly

20

13

RCT

None

Fa

ce-to

-face

5-

7 18

No

ne

Mar

ks

2013

RC

T Tr

anst

heor

etica

l mod

el, s

ocia

l co

gniti

ve th

eory

Fa

ce-to

-face

3

12

None

Pett

2013

Ca

se se

ries

Tran

sthe

oret

ical m

odel

, soc

ial

cogn

itive

theo

ry, B

ronf

enbr

enne

r ec

olog

ical t

heor

y of

hum

an

deve

lopm

ent

Face

-to-fa

ce

2 12

3

mon

ths

Wal

lén

2013

Hi

stor

ically

co

ntro

lled

stud

y No

ne

Face

-to-fa

ce

2-3

24 m

onth

s No

ne

Span

os

2014

Ca

se se

ries

None

Fa

ce-to

-face

, ind

ivid

ually

9

sess

ions

16

No

ne

Ptom

ey

2015

RC

T No

ne

Face

-to-fa

ce

1 8

None

138541-Willems_BNW.indd 87 31-10-19 10:07

88

88

SUPP

LEM

ENTA

L TA

BLE

3 - A

n ov

ervi

ew o

f the

ratin

gs fo

r BCT

s

15 T

hese

resu

lts a

re co

mbi

ned

with

the

proc

ess e

valu

atio

n pa

per f

rom

Bod

de e

t al.

(201

2) d

escr

ibin

g th

e sa

me

stud

y.

16 T

hese

resu

lts a

re co

mbi

ned

with

the

prot

ocol

pap

er fr

om S

hiel

ds e

t al.

(201

0) d

escr

ibin

g th

e sa

me

stud

y.

17 T

hese

resu

lts a

re co

mbi

ned

with

the

prot

ocol

pap

er fr

om V

an S

chijn

del-S

peet

et a

l. (2

013)

des

crib

ing

the

sam

e st

udy.

Stud

y Ye

ar

Info

rmat

ion

in g

ener

al

Info

rmat

ion

to th

e in

divi

dual

Info

rmat

ion

othe

rs'

appr

oval

Norm

ativ

e in

form

atio

n ot

hers

' be

havi

our

Goal

se

tting

(b

ehav

iour

)

Goal

se

tting

(o

utco

me)

Actio

n Pl

anni

ng

Barr

ier

iden

tifica

tion

Grad

ed

task

s Re

view

be

havi

oura

l go

als

Revi

ew

outc

ome

goal

s

Rew

ards

be

havi

our

Rew

ards

su

cces

sful

be

havi

our

Inte

rven

tions

aim

ed a

t phy

sical

act

ivity

(15)

Podg

orsk

i 20

04

- -

- -

- -

- -

- -

- -

-

Jone

s 20

07

- -

- -

- -

YES

- -

- -

- -

Pite

tti

2007

-

- -

- YE

S -

- -

YES

YES

- -

-

Gelle

r 20

09

YES

- -

- -

- YE

S -

- -

- -

-

Tem

ple

2011

-

- -

- YE

S -

- YE

S -

- -

- -

Thom

as

2011

YE

S -

- -

YES

- -

- -

- -

- YE

S

Ulric

h 20

11

- -

- -

- -

- -

YES

- -

- -

Bodd

e15

2012

YE

S -

- -

- -

- YE

S -

- -

- -

Stan

ish

2012

-

- -

- YE

S -

YES

YES

YES

- -

- -

Yen

2012

-

- -

- -

- -

- -

- -

- -

Mitc

hell

2013

YE

S -

- -

YES

- YE

S YE

S YE

S YE

S -

YES

-

Pere

z-Cr

uzad

o 20

13

YES

- -

- -

- -

- -

- -

- -

Shie

lds16

20

13

- -

- -

- -

- YE

S YE

S -

- -

-

Lant

e 20

14

- -

- -

YES

- YE

S -

-

- -

-

Van

Schi

jnde

l17

2014

YE

S -

- -

YES

- YE

S YE

S YE

S -

- YE

S YE

S

Inte

rven

tions

aim

ed a

t nut

ritio

n (3

)

Bart

ley

2011

YE

S -

- -

- -

- -

- -

- YE

S YE

S

Wal

lén

2013

YE

S -

- -

- -

- -

- -

- -

-

Hubb

ard

2014

-

- -

- -

- -

- -

- -

- -

89

18 T

hese

resu

lts a

re co

mbi

ned

with

the

prot

ocol

pap

er fr

om E

linde

r et a

l. (2

010)

des

crib

ing

the

sam

e st

udy.

Inte

rven

tions

aim

ed a

t bot

h ph

ysica

l act

ivity

and

nut

ritio

n (2

3)

Clup

hf

2001

-

- -

- -

- -

- -

- -

YES

YES

Mar

shal

l 20

03

YES

- -

- -

- -

- -

- -

- -

Ewin

g 20

04

YES

- -

- -

- YE

S YE

S -

- -

- -

Brad

ley

2005

YE

S -

- -

- -

- -

- -

- -

-

Chap

man

20

05

YES

- -

- -

- YE

S YE

S -

- -

- -

Man

n 20

06

YES

- -

- -

- -

- -

- -

- -

Saile

r 20

06

YES

- -

- -

YES

- -

- -

YES

YES

YES

Chap

man

2008

YE

S -

- -

- -

YES

- -

- -

- -

Bazz

ano

2009

YE

S -

- -

- -

- -

- -

- -

YES

Mel

ville

20

11

YES

- -

- YE

S YE

S -

YES

YES

YES

YES

- -

Saun

ders

20

11

- -

- -

YES

- -

YES

- -

- -

YES

Case

y 20

12

YES

- -

- YE

S YE

S -

- YE

S -

- YE

S -

McD

erm

ott

2012

YE

S -

- -

- -

- YE

S -

- -

- -

Wilh

ite

2012

YE

S -

- -

YES

- YE

S -

- YE

S -

- YE

S

Beek

en

2013

YE

S -

- -

YES

- -

- -

- -

- -

Berg

stro

m18

20

13

YES

- YE

S -

YES

- YE

S -

- -

- -

-

Curt

in

2013

YE

S -

- -

YES

- YE

S -

- -

- YE

S -

Donn

elly

20

13

YES

- -

- YE

S YE

S -

YES

- YE

S YE

S -

YES

Mar

ks

2013

YE

S -

- -

YES

- -

YES

- -

- -

-

Pett

20

13

YES

- -

- YE

S -

- YE

S -

- -

- -

Wal

lén

2013

YE

S -

- -

- -

- -

- -

- -

-

Span

os

2014

-

- -

- YE

S -

YES

- -

- -

- -

Ptom

ey

2015

-

- -

- YE

S YE

S -

YES

YES

YES

YES

- -

Tota

l -

27

0 1

0 19

5

13

15

9 6

4 7

9

138541-Willems_BNW.indd 88 31-10-19 10:07

89

89

18 T

hese

resu

lts a

re co

mbi

ned

with

the

prot

ocol

pap

er fr

om E

linde

r et a

l. (2

010)

des

crib

ing

the

sam

e st

udy.

Inte

rven

tions

aim

ed a

t bot

h ph

ysica

l act

ivity

and

nut

ritio

n (2

3)

Clup

hf

2001

-

- -

- -

- -

- -

- -

YES

YES

Mar

shal

l 20

03

YES

- -

- -

- -

- -

- -

- -

Ewin

g 20

04

YES

- -

- -

- YE

S YE

S -

- -

- -

Brad

ley

2005

YE

S -

- -

- -

- -

- -

- -

-

Chap

man

20

05

YES

- -

- -

- YE

S YE

S -

- -

- -

Man

n 20

06

YES

- -

- -

- -

- -

- -

- -

Saile

r 20

06

YES

- -

- -

YES

- -

- -

YES

YES

YES

Chap

man

2008

YE

S -

- -

- -

YES

- -

- -

- -

Bazz

ano

2009

YE

S -

- -

- -

- -

- -

- -

YES

Mel

ville

20

11

YES

- -

- YE

S YE

S -

YES

YES

YES

YES

- -

Saun

ders

20

11

- -

- -

YES

- -

YES

- -

- -

YES

Case

y 20

12

YES

- -

- YE

S YE

S -

- YE

S -

- YE

S -

McD

erm

ott

2012

YE

S -

- -

- -

- YE

S -

- -

- -

Wilh

ite

2012

YE

S -

- -

YES

- YE

S -

- YE

S -

- YE

S

Beek

en

2013

YE

S -

- -

YES

- -

- -

- -

- -

Berg

stro

m18

20

13

YES

- YE

S -

YES

- YE

S -

- -

- -

-

Curt

in

2013

YE

S -

- -

YES

- YE

S -

- -

- YE

S -

Donn

elly

20

13

YES

- -

- YE

S YE

S -

YES

- YE

S YE

S -

YES

Mar

ks

2013

YE

S -

- -

YES

- -

YES

- -

- -

-

Pett

20

13

YES

- -

- YE

S -

- YE

S -

- -

- -

Wal

lén

2013

YE

S -

- -

- -

- -

- -

- -

-

Span

os

2014

-

- -

- YE

S -

YES

- -

- -

- -

Ptom

ey

2015

-

- -

- YE

S YE

S -

YES

YES

YES

YES

- -

Tota

l -

27

0 1

0 19

5

13

15

9 6

4 7

9

138541-Willems_BNW.indd 89 31-10-19 10:07

90

90

SUPP

LEM

ENTA

L TA

BLE

4 –

PEDr

o qu

ality

scor

es

19 T

hese

resu

lts a

re c

ombi

ned

with

the

proc

ess e

valu

atio

n pa

per f

rom

Bod

de e

t al.

(201

2) d

escr

ibin

g th

e sa

me

stud

y.

20 T

hese

resu

lts a

re c

ombi

ned

with

the

prot

ocol

pap

er fr

om S

hiel

ds e

t al.

(201

0) d

escr

ibin

g th

e sa

me

stud

y.

Stud

y Ye

ar

Tota

l

scor

e

Item

1*

Item

2

Item

3

Item

4

Item

5

Item

6

Item

7

Item

8

Item

9

Item

10

Item

11

Inte

rven

tions

aim

ed a

t phy

sical

act

ivity

(PA)

(15)

Tota

l sc

ore

of ‘P

A’

- 45

(M=3

) 13

* 5

5 4

0 1

2 4

5 7

11

Podg

orsk

i 20

04

1

o

o

o

o

o

o

o

o

o

Jone

s 20

07

2 o

o

o

o

o

o

o

o

o

Pite

tti

2007

3

o

o

o

o

o

o

o

Gelle

r 20

09

1

o

o

o

o

o

o

o

o

o

Tem

ple

2011

2

o

o

o

o

o

o

o

o

o

Thom

as

2011

1

o

o

o

o

o

o

o

o

o

Ulric

h 20

11

4

o

o

o

o

o

o

Bodd

e19

2012

5

o

o

o

o

o

Stan

ish

2012

1

o

o

o

o

o

o

o

o

o

Yen

2012

2

o

o

o

o

o

o

o

o

o

Mitc

hell

2013

3

o

o

o

o

o

o

o

Pere

z-

Cruz

ado

2013

5

o

o

o

o

o

Shie

lds20

20

13

8

o

o

91

21 T

hese

resu

lts a

re c

ombi

ned

with

the

prot

ocol

pap

er fr

om V

an S

chijn

del-S

peet

et a

l. (2

014)

des

crib

ing

the

sam

e st

udy.

Lant

e 20

14

5

o

o

o

o

o

van

Schi

jnde

l21

2013

2

o

o

o

o

o

o

o

o

Inte

rven

tions

aim

ed a

t nut

ritio

n (3

)

Tota

l sco

re

of ‘n

utrit

ion’

- 5

(M=1

.7)

1*

0 0

1 0

0 0

1 0

1 1

Bart

ley

2011

2

o

o

o

o

o

o

o

o

o

Wal

lén

2013

3

o

o

o

o

o

o

o

o

Hubb

ard

2014

0

o

o

o

o

o

o

o

o

o

o

o

Inte

rven

tions

aim

ed a

t bot

h ph

ysica

l act

ivity

and

nut

ritio

n (2

3)

Tota

l sc

ore

of ‘b

oth’

- 69

(M=3

)

15*

8 5

6 0

0 3

12

6 13

16

Clup

hf

2001

3

o

o

o

o

o

o

o

o

Mar

shal

l 20

03

2 o

o

o

o

o

o

o

o

o

Ewin

g 20

04

1 o

o

o

o

o

o

o

o

o

o

Brad

ley

2005

1

o

o

o

o

o

o

o

o

o

o

Chap

man

20

05

3 o

o

o

o

o

o

o

o

Man

n 20

06

1

o

o

o

o

o

o

o

o

o

Saile

r 20

06

1 o

o

o

o

o

o

o

o

o

o

Chap

man

2008

3

o

o

o

o

o

o

o

o

Bazz

ano

2009

0

o

o

o

o

o

o

o

o

o

o

Mel

ville

20

11

2

o

o

o

o

o

o

o

o

138541-Willems_BNW.indd 90 31-10-19 10:07

91

91

21 T

hese

resu

lts a

re c

ombi

ned

with

the

prot

ocol

pap

er fr

om V

an S

chijn

del-S

peet

et a

l. (2

014)

des

crib

ing

the

sam

e st

udy.

Lant

e 20

14

5

o

o

o

o

o

van

Schi

jnde

l21

2013

2

o

o

o

o

o

o

o

o

Inte

rven

tions

aim

ed a

t nut

ritio

n (3

)

Tota

l sco

re

of ‘n

utrit

ion’

- 5

(M=1

.7)

1*

0 0

1 0

0 0

1 0

1 1

Bart

ley

2011

2

o

o

o

o

o

o

o

o

o

Wal

lén

2013

3

o

o

o

o

o

o

o

o

Hubb

ard

2014

0

o

o

o

o

o

o

o

o

o

o

o

Inte

rven

tions

aim

ed a

t bot

h ph

ysica

l act

ivity

and

nut

ritio

n (2

3)

Tota

l sc

ore

of ‘b

oth’

- 69

(M=3

)

15*

8 5

6 0

0 3

12

6 13

16

Clup

hf

2001

3

o

o

o

o

o

o

o

o

Mar

shal

l 20

03

2 o

o

o

o

o

o

o

o

o

Ewin

g 20

04

1 o

o

o

o

o

o

o

o

o

o

Brad

ley

2005

1

o

o

o

o

o

o

o

o

o

o

Chap

man

20

05

3 o

o

o

o

o

o

o

o

Man

n 20

06

1

o

o

o

o

o

o

o

o

o

Saile

r 20

06

1 o

o

o

o

o

o

o

o

o

o

Chap

man

2008

3

o

o

o

o

o

o

o

o

Bazz

ano

2009

0

o

o

o

o

o

o

o

o

o

o

Mel

ville

20

11

2

o

o

o

o

o

o

o

o

138541-Willems_BNW.indd 91 31-10-19 10:07

92

92

Note

: Bla

ck ci

rcle

s = m

eets

the

PEDr

o cr

iterio

n fo

r tha

t ite

m; w

hite

circ

les =

doe

s not

mee

t the

PED

ro cr

iterio

n fo

r tha

t ite

m. F

or fu

ll lis

t of P

EDro

item

s, se

e th

e M

etho

ds se

ctio

n.

* =

The

first

item

des

crib

es th

e st

udy’

s ext

erna

l val

idity

and

is n

ot u

sed

to ca

lcula

te th

e to

tal P

EDro

scor

e.

22 T

hese

resu

lts a

re c

ombi

ned

with

the

prot

ocol

pap

er fr

om E

linde

r et a

l. (2

010)

des

crib

ing

the

sam

e st

udy.

Saun

ders

20

11

1

o

o

o

o

o

o

o

o

o

Case

y 20

12

3

o

o

o

o

o

o

o

McD

erm

ott

2012

6

o

o

o

o

Wilh

ite

2012

1

o

o

o

o

o

o

o

o

o

Beek

en

2013

3

o

o

o

o

o

o

o

Berg

stro

m22

20

13

4

o

o

o

o

o

o

Curt

in

2013

6

o

o

o

o

Donn

elly

20

13

6

o

o

o

o

Mar

ks

2013

5

o

o

o

o

o

Pett

20

13

6

o

o

o

o

Wal

lén

2013

2

o

o

o

o

o

o

o

o

Span

os

2014

4

o

o

o

o

o

o

o

Ptom

ey

2015

5

o

o

o

o

o

Tota

l sc

ore

of a

ll st

udie

s

- 11

7

(M=2

.6)

29*

13

10

11

0 1

5 17

11

21

28

138541-Willems_BNW.indd 92 31-10-19 10:07

138541-Willems_BNW.indd 93 31-10-19 10:07

Chapter 4

Exploration of suitable behaviour change techniques for lifestyle change in


Mariël Willems

Aly Waninge

Johan de Jong



Journal of Applied Research in Intellectual Disabilities, 2019, 32(3), 543-557.

138541-Willems_BNW.indd 94 31-10-19 10:07

Chapter 4

Exploration of suitable behaviour change techniques for lifestyle change in


Mariël Willems

Aly Waninge

Johan de Jong



Journal of Applied Research in Intellectual Disabilities, 2019, 32(3), 543-557.

138541-Willems_BNW.indd 95 31-10-19 10:07

96

ABSTRACT

Background: Promotion of a healthy lifestyle for individuals with mild intellectual disabilities is important.

However, the suitability of behaviour change techniques (BCTs) for these individuals is still unclear.

Methods: A Delphi study was performed using the Coventry, Aberdeen & LOndon – REfined (CALO‐RE) taxonomy

of BCTs (n = 40). Health professionals (professional caregivers, behavioural scientists, health professionals,

intellectual disability physicians) participated in an online survey to determine whether BCTs were suitable or

unsuitable. Comments from participants were analysed qualitatively.

Results: Consensus was reached for 25 BCTs out of 40.The most suitable BCTs were barrier identification (97%),

set graded tasks (97%) and reward effort towards behaviour (95%). No significant differences were found for

intergroup effects.

Conclusion: Regardless of their position and education level, health professionals reached consensus about the

suitability of BCTs for individuals with mild intellectual disabilities. Increased use of these BCTs could result in

more effective promotion of a healthy lifestyle.

97

1 | INTRODUCTION

Adults with intellectual disabilities are more at risk of being overweight, obese and inactive compared to adults

without intellectual disabilities (Hilgenkamp, Reis, Van Wijck, & Evenhuis, 2012; Melville, Hamilton, Hankey,

Miller, & Boyle, 2007; Waninge et al., 2013). The promotion of a healthy lifestyle, therefore, is important for

individuals with intellectual disabilities (Alesi & Pepi, 2015). Many interventions are aimed at supporting a healthy

lifestyle for this population by targeting nutrition, physical activity or both (Willems, Hilgenkamp, Havik,

Waninge, & Melville, 2017).

To promote a healthy lifestyle, several reviews confirmed the effectiveness of techniques to change behaviour,

called behaviour change techniques (BCTs), for the general population (Bird et al., 2013, Greaves et al., 2011;

Michie, Abraham, Whittington, McAteer, & Gupta, 2009; Olander et al., 2013; Williams & French, 2011).

Bartholomew and Mullen (2011) recommended improving the effectiveness of health‐related behavioural

change and increasing the possibilities of replicating a positive effect by increasing our understanding of the

underlying action mechanisms. One recommendation was to determine techniques to change lifestyle behaviour

(Abraham & Michie, 2008; Rothman, 2004). To achieve this, a 26‐item taxonomy of behaviour change techniques

was developed by Abraham and Michie (2008) which was later refined by Michie et al. (2011) resulting in the 40‐

item Coventry, Aberdeen & LOndon – REfined (CALO‐RE) taxonomy. Another taxonomy was developed later,

named the Behavior Change Technique Taxonomy v1 which consisted of 93 techniques (Michie et al., 2013).

However, there was heterogeneity between results with respect to which particular BCTs were effective for the

general population. Also, associations between the number of used BCTs and the effectiveness of the

intervention as well as the combination of particular BCTs are ambiguous (Bird et al., 2013; Olander et al., 2013).

Some BCTs also do not seem to be interchangeable between specific health behaviours (Michie et al., 2011). In

addition, the suitability of BCTs for specific populations is understudied, and they may need to be adapted or

extended (Michie et al., 2011; Van Schijndel‐Speet, 2015).

A review regarding the use of BCTs in lifestyle interventions for individuals with intellectual disabilities

determined that the BCT’s “Plan social support/social change” and “Provide information on consequences of

behaviour in general” were mostly used (Willems et al., 2017). However, it is unclear whether these BCTs are

effective for individuals with intellectual disabilities and whether the use of these BCTs is sufficient for changing

the lifestyles of these individuals. Also, the BCTs that are used in the previous studies are often not explicitly

labelled as such, which may indicate that these BCTs are used unintentionally. Without intended use of BCTs and

evaluation of this use, effectiveness of the used BCTs could not be determined. BCTs targeting an increase in

knowledge and understanding as well as those primarily using executive functioning may be less suitable for

individuals with mild intellectual disabilities because translation of health knowledge into behaviour might be

difficult for these individuals (Kuijken, Naaldenberg, Nijhuis‐van der Sanden, & Schrojenstein‐Lantman de Valk,

2016). Until now, the suitability of BCTs in lifestyle interventions for individuals with intellectual disabilities

remains unclear.

138541-Willems_BNW.indd 96 31-10-19 10:07

96

ABSTRACT

Background: Promotion of a healthy lifestyle for individuals with mild intellectual disabilities is important.

However, the suitability of behaviour change techniques (BCTs) for these individuals is still unclear.

Methods: A Delphi study was performed using the Coventry, Aberdeen & LOndon – REfined (CALO‐RE) taxonomy

of BCTs (n = 40). Health professionals (professional caregivers, behavioural scientists, health professionals,

intellectual disability physicians) participated in an online survey to determine whether BCTs were suitable or

unsuitable. Comments from participants were analysed qualitatively.

Results: Consensus was reached for 25 BCTs out of 40.The most suitable BCTs were barrier identification (97%),

set graded tasks (97%) and reward effort towards behaviour (95%). No significant differences were found for

intergroup effects.

Conclusion: Regardless of their position and education level, health professionals reached consensus about the

suitability of BCTs for individuals with mild intellectual disabilities. Increased use of these BCTs could result in

more effective promotion of a healthy lifestyle.

97

1 | INTRODUCTION

Adults with intellectual disabilities are more at risk of being overweight, obese and inactive compared to adults

without intellectual disabilities (Hilgenkamp, Reis, Van Wijck, & Evenhuis, 2012; Melville, Hamilton, Hankey,

Miller, & Boyle, 2007; Waninge et al., 2013). The promotion of a healthy lifestyle, therefore, is important for

individuals with intellectual disabilities (Alesi & Pepi, 2015). Many interventions are aimed at supporting a healthy

lifestyle for this population by targeting nutrition, physical activity or both (Willems, Hilgenkamp, Havik,

Waninge, & Melville, 2017).

To promote a healthy lifestyle, several reviews confirmed the effectiveness of techniques to change behaviour,

called behaviour change techniques (BCTs), for the general population (Bird et al., 2013, Greaves et al., 2011;

Michie, Abraham, Whittington, McAteer, & Gupta, 2009; Olander et al., 2013; Williams & French, 2011).

Bartholomew and Mullen (2011) recommended improving the effectiveness of health‐related behavioural

change and increasing the possibilities of replicating a positive effect by increasing our understanding of the

underlying action mechanisms. One recommendation was to determine techniques to change lifestyle behaviour

(Abraham & Michie, 2008; Rothman, 2004). To achieve this, a 26‐item taxonomy of behaviour change techniques

was developed by Abraham and Michie (2008) which was later refined by Michie et al. (2011) resulting in the 40‐

item Coventry, Aberdeen & LOndon – REfined (CALO‐RE) taxonomy. Another taxonomy was developed later,

named the Behavior Change Technique Taxonomy v1 which consisted of 93 techniques (Michie et al., 2013).

However, there was heterogeneity between results with respect to which particular BCTs were effective for the

general population. Also, associations between the number of used BCTs and the effectiveness of the

intervention as well as the combination of particular BCTs are ambiguous (Bird et al., 2013; Olander et al., 2013).

Some BCTs also do not seem to be interchangeable between specific health behaviours (Michie et al., 2011). In

addition, the suitability of BCTs for specific populations is understudied, and they may need to be adapted or

extended (Michie et al., 2011; Van Schijndel‐Speet, 2015).

A review regarding the use of BCTs in lifestyle interventions for individuals with intellectual disabilities

determined that the BCT’s “Plan social support/social change” and “Provide information on consequences of

behaviour in general” were mostly used (Willems et al., 2017). However, it is unclear whether these BCTs are

effective for individuals with intellectual disabilities and whether the use of these BCTs is sufficient for changing

the lifestyles of these individuals. Also, the BCTs that are used in the previous studies are often not explicitly

labelled as such, which may indicate that these BCTs are used unintentionally. Without intended use of BCTs and

evaluation of this use, effectiveness of the used BCTs could not be determined. BCTs targeting an increase in

knowledge and understanding as well as those primarily using executive functioning may be less suitable for

individuals with mild intellectual disabilities because translation of health knowledge into behaviour might be

difficult for these individuals (Kuijken, Naaldenberg, Nijhuis‐van der Sanden, & Schrojenstein‐Lantman de Valk,

2016). Until now, the suitability of BCTs in lifestyle interventions for individuals with intellectual disabilities

remains unclear.

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98

Specific subgroups need specific BCTs that are tailored to the subgroup or the individuals’ preferences and living

situation (Van Schijndel‐Speet, 2015). To tailor BCTs to people with mild intellectual disabilities, it is necessary to

have a clear understanding of the characteristics of this subgroup. According to the Diagnostic and statistical

manual of mental disorders (DSM 5), they suffer from (a) deficits in intellectual functions (e.g., reasoning,

problem‐solving, planning, abstract thinking), (b) deficits in adaptive functions and (c) onset of deficits during the

developmental period (American Psychiatric Association, 2013). Specifically, people with mild intellectual

disabilities need support with abstract thinking, executive functioning, academic skills and additional support

within daily living (American Psychiatric Association, 2013). According to the International statistical classification

of diseases and related health problems (ICD‐10), it is also important to consider the emotional and social

development because of the influence on daily functioning (WHO, 1992). In sum, there is only minimal insight

into the suitability of BCTs for individuals with intellectual disabilities, and additional insight is needed to

determine which BCTs could be suitable for supporting a change in their lifestyles (Willems et al., 2017). This

study aimed to query experts from the field with the Delphi method in order to investigate the suitability of BCTs

for supporting a change in the lifestyles of people with mild intellectual disabilities.

2 | METHODS

2.1 | Design

In this Delphi study, the consensus of experts was achieved in several rounds with intermediate feedback

regarding the suitability of BCTs in individuals with mild intellectual disabilities (De Meyrick, 2003). This method

is considered appropriate for health‐promotion research in “new” areas with only a small knowledge‐base (De

Meyrick, 2003; Milat, King, Bauman, & Redman, 2013; Whitehead, 2008). The Delphi study was performed

between April 2017 and July 2017. The CALO‐RE taxonomy of BCTs (Michie et al., 2011) was used instead of the

Behavior Change Technique Taxonomy (Michie et al., 2013) since this last taxonomy was too extensive for the

goal in this Delphi study, exploring the suitability of BCTs specifically for people with mild intellectual disabilities.

The panel was completed when 66.67% consensus was reached for the suitability of all BCTs or after a maximum

of three rounds since the literature stated that three rounds are usually enough and considering the (time)

investment of professionals participating in the panel (Boulkedid, Abdoul, Loustau, Sibony, & Alberti, 2011).

2.2 | Sample

2.2.1 | Criteria for participants

The Delphi panel consisted of three groups of professionals working with individuals in the Netherlands with mild

intellectual disabilities, and the desired number of participants was at least ten per group. These groups were

selected since they primarily work with individuals with mild intellectual disabilities and provide support in their

daily lives. The first group consisted of professional caregivers; the second group consisted of behavioural

scientists; and the third group consisted of allied health professionals including physiotherapists, speech

therapists, dieticians, psychomotor therapists, movement scientists, occupational therapists, family therapists

and nurse practitioners.

99

2.2.2 | Recruitment of participants

Participants were approached through multiple channels for both Delphi rounds in order to achieve the broadest

representation possible:

- Through expert networks in the field of lifestyle promotion research for individuals with mild intellectual

disabilities. These researchers were asked to share the questionnaire with professional caregivers,

behavioural scientists and healthcare professionals in their own network.

- Through a consortium of Dutch intellectual disability care provider organizations. These organizations

invited their employees to participate in the panel. Employees were asked to invite colleagues to join

the research.

- Through a conference about lifestyle and persons with mild intellectual disabilities that was held on 5

April 2017. Visitors to the conference were invited to participate in the panel. They could participate by

emailing the first author.

2.3 | Measurements

The Coventry, Aberdeen & LOndon – REfined (CALO‐RE) taxonomy was used for designing the questionnaires

and defining BCTs (Michie et al., 2011). This taxonomy consists of a 40‐item list of theory‐based descriptions of

BCTs that are potentially suitable for improving a lifestyle. The CALO‐RE taxonomy was adapted to the CALO‐RE‐

NL in four steps. First, the BCTs were translated into Dutch using the definitions from the CALO‐RE taxonomy.

Second, the wording of the BCTs was simplified in order to be understandable for all of the participants with

different education levels. Third, examples were drafted for all of the BCTs. Fourth, the CALO‐RE‐NL was

converted into a questionnaire. The CALO‐RE‐NL taxonomy is provided in the Appendix.

The questionnaire was pilot‐tested within three groups of intended participants and a group of research experts.

First, it was submitted digitally to experts in research on lifestyle changes in individuals with mild intellectual

disabilities (n = 5). They provided suggestions for further improvements of the formulations and the examples

that were implemented in the questionnaire. Second, the questionnaire was pilot‐tested in a paper form with

professional caregivers (n = 15) who were working with individuals with mild intellectual disabilities in a Dutch

care provider organization. The caregivers completed the questionnaire and offered feedback regarding the

usability (e.g., duration of the questionnaire, the examples used and advised specification of the degree of

intellectual disabilities) with which the questionnaire was further improved. Third, the adapted questionnaire

was pilot‐tested by the other two groups of participants including behavioural scientists (n = 4) and allied health

professionals (n = 4) working with individuals with mild intellectual disabilities. The questionnaire was delivered

using online survey software (www.qualtrics.com), and questions were offered at random. Their feedback (e.g.,

regarding usability of the online version of the questionnaire and used examples) was used to further improve

the questionnaire and the online procedure, for example, the visibility of the questions.

Delphi Round 1: The final questionnaire including the CALO‐RE‐NL taxonomy was used in the first Delphi round.

The 40 translated BCTs and related examples were presented one‐by‐one in random sequence in order to

138541-Willems_BNW.indd 98 31-10-19 10:07

98

Specific subgroups need specific BCTs that are tailored to the subgroup or the individuals’ preferences and living

situation (Van Schijndel‐Speet, 2015). To tailor BCTs to people with mild intellectual disabilities, it is necessary to

have a clear understanding of the characteristics of this subgroup. According to the Diagnostic and statistical

manual of mental disorders (DSM 5), they suffer from (a) deficits in intellectual functions (e.g., reasoning,

problem‐solving, planning, abstract thinking), (b) deficits in adaptive functions and (c) onset of deficits during the

developmental period (American Psychiatric Association, 2013). Specifically, people with mild intellectual

disabilities need support with abstract thinking, executive functioning, academic skills and additional support

within daily living (American Psychiatric Association, 2013). According to the International statistical classification

of diseases and related health problems (ICD‐10), it is also important to consider the emotional and social

development because of the influence on daily functioning (WHO, 1992). In sum, there is only minimal insight

into the suitability of BCTs for individuals with intellectual disabilities, and additional insight is needed to

determine which BCTs could be suitable for supporting a change in their lifestyles (Willems et al., 2017). This

study aimed to query experts from the field with the Delphi method in order to investigate the suitability of BCTs

for supporting a change in the lifestyles of people with mild intellectual disabilities.

2 | METHODS

2.1 | Design

In this Delphi study, the consensus of experts was achieved in several rounds with intermediate feedback

regarding the suitability of BCTs in individuals with mild intellectual disabilities (De Meyrick, 2003). This method

is considered appropriate for health‐promotion research in “new” areas with only a small knowledge‐base (De

Meyrick, 2003; Milat, King, Bauman, & Redman, 2013; Whitehead, 2008). The Delphi study was performed

between April 2017 and July 2017. The CALO‐RE taxonomy of BCTs (Michie et al., 2011) was used instead of the

Behavior Change Technique Taxonomy (Michie et al., 2013) since this last taxonomy was too extensive for the

goal in this Delphi study, exploring the suitability of BCTs specifically for people with mild intellectual disabilities.

The panel was completed when 66.67% consensus was reached for the suitability of all BCTs or after a maximum

of three rounds since the literature stated that three rounds are usually enough and considering the (time)

investment of professionals participating in the panel (Boulkedid, Abdoul, Loustau, Sibony, & Alberti, 2011).

2.2 | Sample


The Delphi panel consisted of three groups of professionals working with individuals in the Netherlands with mild

intellectual disabilities, and the desired number of participants was at least ten per group. These groups were

selected since they primarily work with individuals with mild intellectual disabilities and provide support in their

daily lives. The first group consisted of professional caregivers; the second group consisted of behavioural

scientists; and the third group consisted of allied health professionals including physiotherapists, speech

therapists, dieticians, psychomotor therapists, movement scientists, occupational therapists, family therapists

and nurse practitioners.

99

2.2.2 | Recruitment of participants

Participants were approached through multiple channels for both Delphi rounds in order to achieve the broadest

representation possible:

- Through expert networks in the field of lifestyle promotion research for individuals with mild intellectual

disabilities. These researchers were asked to share the questionnaire with professional caregivers,

behavioural scientists and healthcare professionals in their own network.

- Through a consortium of Dutch intellectual disability care provider organizations. These organizations

invited their employees to participate in the panel. Employees were asked to invite colleagues to join

the research.

- Through a conference about lifestyle and persons with mild intellectual disabilities that was held on 5

April 2017. Visitors to the conference were invited to participate in the panel. They could participate by

emailing the first author.

2.3 | Measurements

The Coventry, Aberdeen & LOndon – REfined (CALO‐RE) taxonomy was used for designing the questionnaires

and defining BCTs (Michie et al., 2011). This taxonomy consists of a 40‐item list of theory‐based descriptions of

BCTs that are potentially suitable for improving a lifestyle. The CALO‐RE taxonomy was adapted to the CALO‐RE‐

NL in four steps. First, the BCTs were translated into Dutch using the definitions from the CALO‐RE taxonomy.

Second, the wording of the BCTs was simplified in order to be understandable for all of the participants with

different education levels. Third, examples were drafted for all of the BCTs. Fourth, the CALO‐RE‐NL was

converted into a questionnaire. The CALO‐RE‐NL taxonomy is provided in the Appendix.

The questionnaire was pilot‐tested within three groups of intended participants and a group of research experts.

First, it was submitted digitally to experts in research on lifestyle changes in individuals with mild intellectual

disabilities (n = 5). They provided suggestions for further improvements of the formulations and the examples

that were implemented in the questionnaire. Second, the questionnaire was pilot‐tested in a paper form with

professional caregivers (n = 15) who were working with individuals with mild intellectual disabilities in a Dutch

care provider organization. The caregivers completed the questionnaire and offered feedback regarding the

usability (e.g., duration of the questionnaire, the examples used and advised specification of the degree of

intellectual disabilities) with which the questionnaire was further improved. Third, the adapted questionnaire

was pilot‐tested by the other two groups of participants including behavioural scientists (n = 4) and allied health

professionals (n = 4) working with individuals with mild intellectual disabilities. The questionnaire was delivered

using online survey software (www.qualtrics.com), and questions were offered at random. Their feedback (e.g.,

regarding usability of the online version of the questionnaire and used examples) was used to further improve

the questionnaire and the online procedure, for example, the visibility of the questions.

Delphi Round 1: The final questionnaire including the CALO‐RE‐NL taxonomy was used in the first Delphi round.

The 40 translated BCTs and related examples were presented one‐by‐one in random sequence in order to

138541-Willems_BNW.indd 99 31-10-19 10:07

100

prevent question order bias. For every BCT, participants were asked if the BCT was suitable for influencing the

lifestyles of individuals with mild intellectual disabilities. Dichotomous answers included “yes, this technique is

suitable” or “no, this technique is not suitable.” With each dichotomous answer, there was also an open field to

write down comments. The first questionnaire was delivered using the web‐based survey software,

Qualtrics.com, that invited participants by email and which included an anonymous hyperlink to the

questionnaire. Participants were asked to respond within 16 days. Personal information was asked about job

position, years of work experience and email address (not obligatory). Answers were collected and anonymously

analysed. Participants provided informed consent before participating in any of the Delphi rounds.

Delphi Round 2: After the data from the first Delphi round were analysed, a second questionnaire was designed

based on the outcomes from it. The purpose of the second round was to determine consensus about the

suitability of the BCTs in which no consensus was reached in the first round. The BCTs and corresponding

examples were similar to the second questionnaire. The only exception concerned some of the examples that

were not completely clear to the participants; this was expressed in the comments provided by the participants

in the open fields in the first round. Only minor changes were made to the examples (e.g., the time period in

which a behaviour goal had to be completed).

Participants were asked whether or not these BCTs were suitable. Again, there was an open field to write down

comments. The group decisions from Round 1 were shown in percentages per technique using only one decimal

in case the percentage decimal was exactly 0.5. Comments from participants in Round 1 were translated into

statements that were more common and comprehensive by the first author (MW) and checked by the second

author (AW). Disagreements were resolved by a consensus discussion. These resumptive comments (e.g.,

“according to participants of the panel, suitability depends on the client characteristics”) were shown per

technique next to the group decisions from Round 1. The questionnaire was tailored to the groups of participants,

and questions were offered in a random order. The second questionnaire was also delivered using the web‐based

survey software, Qualtrics.com, by which participants were invited through an email containing an anonymous

hyperlink to the questionnaire. Participants were asked to respond within 16 days. Personal information was

asked about job position, years of work experience and email address (not obligatory).

2.4 | Data analyses

Round 1: After collecting the data from the first questionnaire, consensus was determined. There is no generally

accepted cut‐off score for the consensus that was reached (Becker, & Roberts, 2009; Boulkedid et al., 2011). The

present authors used a cut‐off score of 66.67% consensus both for evaluating a BCT as suitable or not (in changing

lifestyle) in the first round. The 66.67% consensus was determined by dividing the number of corresponding

answers of the participants (yes, suitable/no, not suitable) by the number of participants for that group. The

present authors calculated the total consensus (in %) of each group and the total consensus (in %) of all of the

groups together. Since the questions were offered at random, the answers from incomplete questionnaires were

also used in the analyses. The comments of participants were analysed by theme and categorized. These

101

categories or themes were used in the second questionnaire in order to give participants’ feedback on the results

of the first round.

Per profession group, the inter‐rater reliability of the binary suitability scores was estimated by the alpha

coefficient from the ordinal factor analysis performed on the tetrachoric correlation coefficients (Revelle &

Zinbarg, 2009). Reliability was considered poor or moderate (ICC < 0.75), good (ICC 0.75–0.90) or very good (ICC

> 0.90) (Portney & Watkins, 2000). To investigate agreement between profession groups, the present authors

computed the two‐way intraclass correlation coefficient (ICC) (McGraw & Wong, 1996) by using the average BCT

score per profession group. Also for the ICC, reliability was considered poor or moderate (ICC < 0.75), good (ICC

0.75–0.90) or very good (ICC > 0.90) (Portney & Watkins, 2000). To investigate whether there was any systematic

bias of a profession group with respect to any other profession group, a mixed model analysis (Pinheiro, & Bates,

2000) was undertaken on the average BCT scores per profession. In the mixed model, random intercepts were

specified for the BCTs and fixed effects for the profession groups. A pairwise comparison (Hothorn, Bretz, &

Westfall, 2008) was used to analyse the intergroup effects. For all statistical analyses, raters with more than 30%

missing BCT suitability evaluations were discarded from further analysis. R v3.3.0 was used (R Core Team, 2017).

Round 2: After data collection, consensus for the BCTs in Round 2 was determined within each group. The total

number of BCTs with consensus and the number of suitable BCTs for this round was not calculated for the total

group since the BCTs in the second questionnaire differed per group depending on the consensus found in the

first round per group. This made it also impossible to compute the agreement between profession groups and

the systematic bias of a profession group with respect to another profession group.

The present authors calculated the total consensus (in %) for all BCTs of each group and that over all groups.

Suitable BCTs were ranked by mean consensus using the percentages of consensus on suitability for all of the

groups. Comments from participants were analysed regarding theme and then categorized. The answers of

behavioural scientists were compared separately with the other groups since this profession group has the most

extensive education and working experience with BCTs. The present authors compared the consensus of the

behavioural scientists with the consensus of the other groups to identify possible differences in consensus.

3 | RESULTS

3.1 | First Delphi round

A total of 97 professionals responded to the questionnaire in the first round. Ten respondents did not answer

any of the questions. Four participants declared that they did not want to participate in the research and,

therefore, did not respond to further questions. Answers from two participants were excluded from the data

analysis as they did not satisfy the inclusion criteria for participants. Answers of 81 participants were included in

the data analysis of which 58 completed the entire questionnaire. No patterns of missing data were found, and

138541-Willems_BNW.indd 100 31-10-19 10:07

100

prevent question order bias. For every BCT, participants were asked if the BCT was suitable for influencing the

lifestyles of individuals with mild intellectual disabilities. Dichotomous answers included “yes, this technique is

suitable” or “no, this technique is not suitable.” With each dichotomous answer, there was also an open field to

write down comments. The first questionnaire was delivered using the web‐based survey software,

Qualtrics.com, that invited participants by email and which included an anonymous hyperlink to the

questionnaire. Participants were asked to respond within 16 days. Personal information was asked about job

position, years of work experience and email address (not obligatory). Answers were collected and anonymously

analysed. Participants provided informed consent before participating in any of the Delphi rounds.

Delphi Round 2: After the data from the first Delphi round were analysed, a second questionnaire was designed

based on the outcomes from it. The purpose of the second round was to determine consensus about the

suitability of the BCTs in which no consensus was reached in the first round. The BCTs and corresponding

examples were similar to the second questionnaire. The only exception concerned some of the examples that

were not completely clear to the participants; this was expressed in the comments provided by the participants

in the open fields in the first round. Only minor changes were made to the examples (e.g., the time period in

which a behaviour goal had to be completed).

Participants were asked whether or not these BCTs were suitable. Again, there was an open field to write down

comments. The group decisions from Round 1 were shown in percentages per technique using only one decimal

in case the percentage decimal was exactly 0.5. Comments from participants in Round 1 were translated into

statements that were more common and comprehensive by the first author (MW) and checked by the second

author (AW). Disagreements were resolved by a consensus discussion. These resumptive comments (e.g.,

“according to participants of the panel, suitability depends on the client characteristics”) were shown per

technique next to the group decisions from Round 1. The questionnaire was tailored to the groups of participants,

and questions were offered in a random order. The second questionnaire was also delivered using the web‐based

survey software, Qualtrics.com, by which participants were invited through an email containing an anonymous

hyperlink to the questionnaire. Participants were asked to respond within 16 days. Personal information was

asked about job position, years of work experience and email address (not obligatory).

2.4 | Data analyses

Round 1: After collecting the data from the first questionnaire, consensus was determined. There is no generally

accepted cut‐off score for the consensus that was reached (Becker, & Roberts, 2009; Boulkedid et al., 2011). The

present authors used a cut‐off score of 66.67% consensus both for evaluating a BCT as suitable or not (in changing

lifestyle) in the first round. The 66.67% consensus was determined by dividing the number of corresponding

answers of the participants (yes, suitable/no, not suitable) by the number of participants for that group. The

present authors calculated the total consensus (in %) of each group and the total consensus (in %) of all of the

groups together. Since the questions were offered at random, the answers from incomplete questionnaires were

also used in the analyses. The comments of participants were analysed by theme and categorized. These

101

categories or themes were used in the second questionnaire in order to give participants’ feedback on the results

of the first round.

Per profession group, the inter‐rater reliability of the binary suitability scores was estimated by the alpha

coefficient from the ordinal factor analysis performed on the tetrachoric correlation coefficients (Revelle &

Zinbarg, 2009). Reliability was considered poor or moderate (ICC < 0.75), good (ICC 0.75–0.90) or very good (ICC

> 0.90) (Portney & Watkins, 2000). To investigate agreement between profession groups, the present authors

computed the two‐way intraclass correlation coefficient (ICC) (McGraw & Wong, 1996) by using the average BCT

score per profession group. Also for the ICC, reliability was considered poor or moderate (ICC < 0.75), good (ICC

0.75–0.90) or very good (ICC > 0.90) (Portney & Watkins, 2000). To investigate whether there was any systematic

bias of a profession group with respect to any other profession group, a mixed model analysis (Pinheiro, & Bates,

2000) was undertaken on the average BCT scores per profession. In the mixed model, random intercepts were

specified for the BCTs and fixed effects for the profession groups. A pairwise comparison (Hothorn, Bretz, &

Westfall, 2008) was used to analyse the intergroup effects. For all statistical analyses, raters with more than 30%

missing BCT suitability evaluations were discarded from further analysis. R v3.3.0 was used (R Core Team, 2017).

Round 2: After data collection, consensus for the BCTs in Round 2 was determined within each group. The total

number of BCTs with consensus and the number of suitable BCTs for this round was not calculated for the total

group since the BCTs in the second questionnaire differed per group depending on the consensus found in the

first round per group. This made it also impossible to compute the agreement between profession groups and

the systematic bias of a profession group with respect to another profession group.

The present authors calculated the total consensus (in %) for all BCTs of each group and that over all groups.

Suitable BCTs were ranked by mean consensus using the percentages of consensus on suitability for all of the

groups. Comments from participants were analysed regarding theme and then categorized. The answers of

behavioural scientists were compared separately with the other groups since this profession group has the most

extensive education and working experience with BCTs. The present authors compared the consensus of the

behavioural scientists with the consensus of the other groups to identify possible differences in consensus.

3 | RESULTS

3.1 | First Delphi round

A total of 97 professionals responded to the questionnaire in the first round. Ten respondents did not answer

any of the questions. Four participants declared that they did not want to participate in the research and,

therefore, did not respond to further questions. Answers from two participants were excluded from the data

analysis as they did not satisfy the inclusion criteria for participants. Answers of 81 participants were included in

the data analysis of which 58 completed the entire questionnaire. No patterns of missing data were found, and

138541-Willems_BNW.indd 101 31-10-19 10:07

102

answers ranged from 60 to 69 per BCT (Mean 64.2; SD 1.98). Figure 1 illustrates a flow chart of the Delphi rounds

for all of the participant groups.

Figure 1 Flow chart number of BCTs per Delphi round per group of participants

Three groups of participants were initially included. In addition, a fourth group was added after the first Delphi

round that consisted of physicians specialized in care for individuals with intellectual disabilities, henceforth

referred to as intellectual disability physicians. This group was separated from the other groups because of their

different levels of education, expertise and work experiences. From the participants who described their job

function in the “other” category, five were added to the group with the professional caregivers, 12 were added

to the group with allied health professionals, and 15 were added to the group with the intellectual disability

physicians. This results in the distribution amongst the four groups as described in Table 1.

Table 1 Overview of consensus after Delphi round 1

Professional

caregivers

Behavioural

scientists

Allied health

professionals

ID

Physicians

Total group

participants

No. of participants 18 10 38 15 81

No. of completed questionnaires 13 (72%) 6 (60%) 28 (74%) 11 (73%) 58 (72%)

No. of BCTs with consensus 28 (70%) 31 (77.5%) 31 (77.5%) 28 (70%) 18 (45%)

Suitable BCTs 25 (62.5%) 25 (62.5%) 29 (72.5%) 25 (62.5%) 17 (42.5%)

The total group of participants reached consensus for 18 BCTs: 17 BCTs were considered suitable, and one was

considered unsuitable, that is, “Prompt anticipated regret”. For two BCTs, no consensus was found in all of the

four groups: “Facilitate social comparison” and “Stress management/emotional control training”. For 20 BCTs,

consensus about suitability was found for some but not for all groups of participants. See Table 1 for additional

details regarding group consensus.

An overview of the ordinal alpha for inter‐rater reliability regarding the agreement over raters for each profession

group is shown in Table 2. Alpha was moderate for behavioural scientists (α 0.72, CI 0.562–0.853) and good for

Round 2

Round 1

Behavioural scientists

BCTsN=40

SuitableN=25

UnsuitableN=6

No consensus N=9

SuitableN=5

UnsuitableN=1

No consensus N=3Round 2

Round 1

Professional caregivers

BCTsN=40

SuitableN=25

UnsuitableN=3

No consensusN=12

SuitableN=5

UnsuitableN=4

No consensus N=3

Round 2

Round 1

Physicians ID BCTsN=40

SuitableN=25

UnsuitableN=3

No consensus N=12

SuitableN=5

UnsuitableN=0


Round 1

Allied health professionals

BCTsN=40

SuitableN=29

UnsuitableN=2

No consensus N=9

SuitableN=5

UnsuitableN=2

No consensus N=2

103

professional caregivers (α 0.81, CI 0.715– 0.876), allied health professionals (α 0.88, CI 0.820–0.915) and

intellectual disability physicians (α 0.83, CI 0.627–0.915). Among the excluded raters with missing evaluations,

there was one with 38% missing, and the others had more than 50% missing. ICC for agreement between

profession groups was good (ICC 0.876, CI 0.8; 0.929) which indicates a high degree of agreement between the

groups. Analysis of the intergroup effects showed no evidence for significant differences in mean scores between

the four profession groups whereas none of the pairwise comparisons were significant (see also Table 3).

Table 2: Interrater reliability per group of professionals

Profession group Number of raters (total no. of raters) α (ordinal Alpha) 95% CI*

Professional caregivers 13 (18) 0.81 0.715- 0.876

Behavioural scientists 6 (10) 0.72 0.562-0.853

Allied health professionals 28 (38) 0.88 0.820- 0.915

ID Physicians 11 (15) 0.83 0.627-0.915

* CI, Confidence Intervals

Table 3: Group comparisons of mean rating per BCT for each group of professionals

Profession groups Estimate Standard Error p-value

Professional caregivers - Behavioural scientists 0.04872 0.02894 0.3324

Allied health professionals - Behavioural scientists 0.07173 0.02894 0.0632

ID Physicians - Behavioural scientists 0.03333 0.02894 0.6573

Allied health professionals - Professional caregivers 0.02301 0.02894 0.8567

ID Physicians - Professional caregivers -0.01538 0.02894 0.9514

ID Physicians - Allied health professionals -0.03839 0.02894 0.5459

3.2 | Second Delphi round

A total of 123 professionals responded to the questionnaire in the second round. Nine respondents did not

answer any of the questions. Three respondents stated that they did not want to participate further in the

research and, therefore, had not responded to further questions. Two participants stated that they wanted to

participate, however, did not answer any of the further questions. The answers of 112 participants were included

in data analysis, and 87 participants completed the questionnaire. Figure 1 provides a flow chart of the Delphi

rounds.

For the group of professional caregivers, Rounds 1 and 2 resulted in consensus about 30 suitable and seven

unsuitable BCTs; see also Figure 1. For three BCTs, consensus was not reached, that is, “Provide information on

consequences of behaviour to the individual,” “Goal setting (outcome)” and “Agree behavioural contract”. An

overview of consensus after Delphi round 2 is shown in Table 4.

For the group of behavioural scientists, Rounds 1 and 2 resulted in consensus about 30 suitable and seven

unsuitable BCTs (see Figure 1). For three BCTs, consensus was not reached the following: “Prompt review of

outcome goals”, “Environmental restructuring” and “Facilitate social comparison”.

138541-Willems_BNW.indd 102 31-10-19 10:07

102

answers ranged from 60 to 69 per BCT (Mean 64.2; SD 1.98). Figure 1 illustrates a flow chart of the Delphi rounds

for all of the participant groups.

Figure 1 Flow chart number of BCTs per Delphi round per group of participants

Three groups of participants were initially included. In addition, a fourth group was added after the first Delphi

round that consisted of physicians specialized in care for individuals with intellectual disabilities, henceforth

referred to as intellectual disability physicians. This group was separated from the other groups because of their

different levels of education, expertise and work experiences. From the participants who described their job

function in the “other” category, five were added to the group with the professional caregivers, 12 were added

to the group with allied health professionals, and 15 were added to the group with the intellectual disability

physicians. This results in the distribution amongst the four groups as described in Table 1.


Professional

caregivers

Behavioural

scientists

Allied health

professionals

ID

Physicians

Total group

participants



No. of BCTs with consensus 28 (70%) 31 (77.5%) 31 (77.5%) 28 (70%) 18 (45%)

Suitable BCTs 25 (62.5%) 25 (62.5%) 29 (72.5%) 25 (62.5%) 17 (42.5%)

The total group of participants reached consensus for 18 BCTs: 17 BCTs were considered suitable, and one was

considered unsuitable, that is, “Prompt anticipated regret”. For two BCTs, no consensus was found in all of the

four groups: “Facilitate social comparison” and “Stress management/emotional control training”. For 20 BCTs,

consensus about suitability was found for some but not for all groups of participants. See Table 1 for additional

details regarding group consensus.

An overview of the ordinal alpha for inter‐rater reliability regarding the agreement over raters for each profession

group is shown in Table 2. Alpha was moderate for behavioural scientists (α 0.72, CI 0.562–0.853) and good for

Round 2

Round 1

Behavioural scientists

BCTsN=40

SuitableN=25

UnsuitableN=6

No consensus N=9

SuitableN=5

UnsuitableN=1


Round 1

Professional caregivers

BCTsN=40

SuitableN=25

UnsuitableN=3

No consensusN=12

SuitableN=5

UnsuitableN=4

No consensus N=3

Round 2

Round 1

Physicians ID BCTsN=40

SuitableN=25

UnsuitableN=3

No consensus N=12

SuitableN=5

UnsuitableN=0


Round 1

Allied health professionals

BCTsN=40

SuitableN=29

UnsuitableN=2

No consensus N=9

SuitableN=5

UnsuitableN=2

No consensus N=2

103

professional caregivers (α 0.81, CI 0.715– 0.876), allied health professionals (α 0.88, CI 0.820–0.915) and

intellectual disability physicians (α 0.83, CI 0.627–0.915). Among the excluded raters with missing evaluations,

there was one with 38% missing, and the others had more than 50% missing. ICC for agreement between

profession groups was good (ICC 0.876, CI 0.8; 0.929) which indicates a high degree of agreement between the

groups. Analysis of the intergroup effects showed no evidence for significant differences in mean scores between

the four profession groups whereas none of the pairwise comparisons were significant (see also Table 3).

Table 2: Interrater reliability per group of professionals

Profession group Number of raters (total no. of raters) α (ordinal Alpha) 95% CI*

Professional caregivers 13 (18) 0.81 0.715- 0.876

Behavioural scientists 6 (10) 0.72 0.562-0.853

Allied health professionals 28 (38) 0.88 0.820- 0.915

ID Physicians 11 (15) 0.83 0.627-0.915

* CI, Confidence Intervals

Table 3: Group comparisons of mean rating per BCT for each group of professionals

Profession groups Estimate Standard Error p-value

Professional caregivers - Behavioural scientists 0.04872 0.02894 0.3324

Allied health professionals - Behavioural scientists 0.07173 0.02894 0.0632

ID Physicians - Behavioural scientists 0.03333 0.02894 0.6573

Allied health professionals - Professional caregivers 0.02301 0.02894 0.8567

ID Physicians - Professional caregivers -0.01538 0.02894 0.9514

ID Physicians - Allied health professionals -0.03839 0.02894 0.5459

3.2 | Second Delphi round

A total of 123 professionals responded to the questionnaire in the second round. Nine respondents did not

answer any of the questions. Three respondents stated that they did not want to participate further in the

research and, therefore, had not responded to further questions. Two participants stated that they wanted to

participate, however, did not answer any of the further questions. The answers of 112 participants were included

in data analysis, and 87 participants completed the questionnaire. Figure 1 provides a flow chart of the Delphi

rounds.

For the group of professional caregivers, Rounds 1 and 2 resulted in consensus about 30 suitable and seven

unsuitable BCTs; see also Figure 1. For three BCTs, consensus was not reached, that is, “Provide information on

consequences of behaviour to the individual,” “Goal setting (outcome)” and “Agree behavioural contract”. An

overview of consensus after Delphi round 2 is shown in Table 4.

For the group of behavioural scientists, Rounds 1 and 2 resulted in consensus about 30 suitable and seven

unsuitable BCTs (see Figure 1). For three BCTs, consensus was not reached the following: “Prompt review of

outcome goals”, “Environmental restructuring” and “Facilitate social comparison”.

138541-Willems_BNW.indd 103 31-10-19 10:07

104

For the group of allied health professionals, Rounds 1 and 2 resulted in consensus on 34 suitable and four

unsuitable BCTs (see Figure 1). For two BCTs, consensus was not reached the following: “Prompt use of imagery”

and “General communication skill training”.


Professional

caregivers

Behavioural

scientists

Allied health

professionals

ID

physicians

Total group

participants



No. of BCTs evaluated 12 9 9 12 22

No. of BCTs with consensus 9 (75%) 6 (67%) 7 (78%) 5 (42%) -

Suitable BCTs 5 (42%) 5 (56%) 5 (56%) 5 (42%) -

For the group of intellectual disability physicians, Rounds 1 and 2 resulted in consensus on 30 suitable and three

unsuitable BCTs (see Figure 1). For seven BCTs, consensus was not reached the following: “Normative

information others’ behaviour”, “Generalization of behaviour”, “Self‐monitoring of behaviour”, “Behavioural

contract”, “Identification as role model”, “Fear arousal” and “Self‐talk”.

3.3 | Results for the total group after two Delphi rounds

A comparison of the answers from the four groups (professional caregivers, behavioural scientists, allied health

professionals and intellectual disability physicians) shows only minor differences as depicted in Table 5.

Differences were determined for seven BCTs whereby consensus differed between participant groups since one

of them reached consensus about suitability whereas another reached consensus about unsuitability. These

seven BCTs are as follows: Stress management/ emotional control training”, “Review outcome goals”, “Self‐talk”,

“General communication skill training”, “Identification as role model”, “Normative information others’

behaviour” and “Facilitate social comparison”. Three participant groups differed in consensus for two BCTs from

the other groups, and only one participant group (allied health professionals) differed from the other group for

one BCT (“Normative information about others’ behaviour”). Specifically, the answers of behavioural scientists

differed for two BCTs compared to the other participant groups including the following: “General communication

skill training” and “Identification as role model.” The behavioural scientists reached consensus for these BCTs

being unsuitable whereas the other groups indicated that these BCTs were suitable or did not reach consensus

about the BCT. See also Table 5 for the consensus about the BCTs for each group as well as the direction of

consensus.

Consensus was reached for 25 BCTs, 24 of which were considered as suitable, and one BCT was considered

unsuitable: “Prompt anticipated regret.” Therefore, the total mean consensus for suitability is low for “Prompt

anticipated regret” in Table 5 (18% suitability, mean total consensus). According to the mean total consensus of

suitability, most participants considered the following BCTs to be suitable: “Barrier identification/problem‐

solving” (97.3% consensus), “Set graded tasks” (96.6% consensus), “Prompt rewards contingent on effort or

105

progress towards behaviour” (95.3% consensus), “Motivational interviewing” (94.4% consensus) and “Action

planning” (90.8% consensus). For an overview of mean consensus per BCT, see Table 5.

A total number of 613 comments were given in the two Delphi rounds (Mean 15.3; SD 7.9; range 3–38) including

368 comments given with a response that the BCT was suitable and 245 comments with a response that the BCT

was unsuitable. The comments were categorized into five categories, including:

1. Methods/validity: comments about the methods or validity of the study methods or the text in the

questionnaire (e.g., “the example is confusing”);

2. Feasibility: comments about the feasibility of the BCT (e.g., “it depends on what the reward

entails”);

3. Relative techniques: comments about the suitability of the BCT in relationship to other BCTs (e.g.,

“encouraging on itself is rarely enough. Pre‐structuring and shaping is a prerequisite”);

4. Client characteristics: comments about the suitability of the BCT in relationship to client

characteristics (e.g., “depending on the client and his possible fears”);

5. Support from others: comments about the suitability of the BCT in relation to support from others

(e.g., “the BCT is only suitable if the personal caregiver supports the client”).

Consensus seemed to be reached primarily for the BCTs with fewer comments (see, for more details, Table 5).

Most comments were offered for the category “client characteristics” (n = 241), and fewer comments were given

for the category “methods/validity” (n = 31); see also Table 6. The most suitable BCTs (barrier identification,

graded tasks, reward effort towards behaviour, motivational interviewing and action planning) received a lower

number of comments than average (mean 8.4; SD 3.0; range 5–13). Table 7 provides an overview of the number

of comments per category for every BCT ranked by suitability.

138541-Willems_BNW.indd 104 31-10-19 10:08

104

For the group of allied health professionals, Rounds 1 and 2 resulted in consensus on 34 suitable and four

unsuitable BCTs (see Figure 1). For two BCTs, consensus was not reached the following: “Prompt use of imagery”

and “General communication skill training”.


Professional

caregivers

Behavioural

scientists

Allied health

professionals

ID

physicians

Total group

participants



No. of BCTs evaluated 12 9 9 12 22

No. of BCTs with consensus 9 (75%) 6 (67%) 7 (78%) 5 (42%) -

Suitable BCTs 5 (42%) 5 (56%) 5 (56%) 5 (42%) -

For the group of intellectual disability physicians, Rounds 1 and 2 resulted in consensus on 30 suitable and three

unsuitable BCTs (see Figure 1). For seven BCTs, consensus was not reached the following: “Normative

information others’ behaviour”, “Generalization of behaviour”, “Self‐monitoring of behaviour”, “Behavioural

contract”, “Identification as role model”, “Fear arousal” and “Self‐talk”.

3.3 | Results for the total group after two Delphi rounds

A comparison of the answers from the four groups (professional caregivers, behavioural scientists, allied health

professionals and intellectual disability physicians) shows only minor differences as depicted in Table 5.

Differences were determined for seven BCTs whereby consensus differed between participant groups since one

of them reached consensus about suitability whereas another reached consensus about unsuitability. These

seven BCTs are as follows: Stress management/ emotional control training”, “Review outcome goals”, “Self‐talk”,

“General communication skill training”, “Identification as role model”, “Normative information others’

behaviour” and “Facilitate social comparison”. Three participant groups differed in consensus for two BCTs from

the other groups, and only one participant group (allied health professionals) differed from the other group for

one BCT (“Normative information about others’ behaviour”). Specifically, the answers of behavioural scientists

differed for two BCTs compared to the other participant groups including the following: “General communication

skill training” and “Identification as role model.” The behavioural scientists reached consensus for these BCTs

being unsuitable whereas the other groups indicated that these BCTs were suitable or did not reach consensus

about the BCT. See also Table 5 for the consensus about the BCTs for each group as well as the direction of

consensus.

Consensus was reached for 25 BCTs, 24 of which were considered as suitable, and one BCT was considered

unsuitable: “Prompt anticipated regret.” Therefore, the total mean consensus for suitability is low for “Prompt

anticipated regret” in Table 5 (18% suitability, mean total consensus). According to the mean total consensus of

suitability, most participants considered the following BCTs to be suitable: “Barrier identification/problem‐

solving” (97.3% consensus), “Set graded tasks” (96.6% consensus), “Prompt rewards contingent on effort or

105

progress towards behaviour” (95.3% consensus), “Motivational interviewing” (94.4% consensus) and “Action

planning” (90.8% consensus). For an overview of mean consensus per BCT, see Table 5.

A total number of 613 comments were given in the two Delphi rounds (Mean 15.3; SD 7.9; range 3–38) including

368 comments given with a response that the BCT was suitable and 245 comments with a response that the BCT

was unsuitable. The comments were categorized into five categories, including:

1. Methods/validity: comments about the methods or validity of the study methods or the text in the

questionnaire (e.g., “the example is confusing”);

2. Feasibility: comments about the feasibility of the BCT (e.g., “it depends on what the reward

entails”);

3. Relative techniques: comments about the suitability of the BCT in relationship to other BCTs (e.g.,

“encouraging on itself is rarely enough. Pre‐structuring and shaping is a prerequisite”);

4. Client characteristics: comments about the suitability of the BCT in relationship to client

characteristics (e.g., “depending on the client and his possible fears”);

5. Support from others: comments about the suitability of the BCT in relation to support from others

(e.g., “the BCT is only suitable if the personal caregiver supports the client”).

Consensus seemed to be reached primarily for the BCTs with fewer comments (see, for more details, Table 5).

Most comments were offered for the category “client characteristics” (n = 241), and fewer comments were given

for the category “methods/validity” (n = 31); see also Table 6. The most suitable BCTs (barrier identification,

graded tasks, reward effort towards behaviour, motivational interviewing and action planning) received a lower

number of comments than average (mean 8.4; SD 3.0; range 5–13). Table 7 provides an overview of the number

of comments per category for every BCT ranked by suitability.

138541-Willems_BNW.indd 105 31-10-19 10:08

106

106

Tabl

e 5

Ove

rvie

w o

f con

sens

us a

nd g

iven

com

men

ts fo

r Del

phi p

anel

Beha

viou

r cha

nge

tech

niqu

e *M

ean

tota

l co

nsen

sus

for

suita

bilit

y (%

)

Cons

ensu

s pr

ofes

siona

l ca

regi

vers

(%

)

Cons

ensu

s be

havi

oura

l sc

ient

ists

(%)

Cons

ensu

s al

lied

heal

th

prof

essio

nals

(%)

Cons

ensu

s ID

ph

ysici

ans

(%)

Num

ber o

f co

mm

ents

fo

r ans

wer

‘su

itabl

e BC

T’

Num

ber o

f co

mm

ents

fo

r ans

wer

‘u

nsui

tabl

e BC

T’

Tota

l num

ber

of co

mm

ents

pe

r BCT

#8 B

arrie

r ide

ntifi

catio

n 97

10

0 10

0 89

10

0 8

1 9

#9 G

rade

d ta

sks

97

93

100

93

100

8 0

8

#12

Rew

ard

effo

rt to

war

ds b

ehav

iour

95

10

0 10

0 97

85

3

2 5

#37

Mot

ivat

iona

l int

ervi

ewin

g 94

10

0 10

0 93

85

12

1

13

#7 A

ctio

n pl

anni

ng

91

100

67

96

100

7 0

7

#26

Prom

pt p

ract

ice

88

87

86

93

85

9 0

9

#21

Inst

ruct

ions

on

how

to p

erfo

rm th

e be

havi

our

88

100

86

86

79

13

2 15

#13

Rew

ards

on

succ

essf

ul b

ehav

iour

87

85

10

0 93

69

8

0 8

#18

Focu

s on

past

succ

ess

86

93

86

93

71

3 1

4

#23

Teac

h to

use

pro

mpt

s/cu

es

86

73

100

89

80

9 3

12

#22

Mod

el/ d

emon

stra

te b

ehav

iour

85

93

67

79

10

0 10

4

14

#35

Rela

pse

prev

entio

n/co

ping

pla

nnin

g 84

93

8

86

75

3 0

3

#40

Stim

ulat

e an

ticip

atio

n of

futu

re re

war

ds

83

81

91

90

69

8 2

10

#5 G

oal s

ettin

g (b

ehav

iour

) 82

79

91

68

91

6

6 12

#29

Plan

socia

l sup

port

/soc

ial c

hang

e 82

67

83

86

92

5

6 11

#14

Shap

ing

81

86

88

75

77

4 3

7

#38

Tim

e m

anag

emen

t 79

77

67

90

83

4

1 5

#10

Revi

ew b

ehav

iour

al g

oals

79

80

67

90

79

10

3 13

#17

Self-

mon

itorin

g of

out

com

e 78

71

86

82

74

16

6

22

#19

Feed

back

on

perfo

rman

ce

78

93

71

71

77

3 4

7

#20

Info

rmat

ion

whe

re a

nd w

hen

to p

erfo

rm b

ehav

iour

77

85

83

68

73

10

2

12

#1 In

form

atio

n on

cons

eque

nces

in g

ener

al

77

73

83

75

75

10

1 11

#3 In

form

atio

n ab

out o

ther

s' ap

prov

al

74

79

67

72

77

12

8 20

107

#27

Use

of fo

llow

-up

prom

pts

70

71

67

75

67

8 7

15

#31

Prom

pt a

ntici

pate

d re

gret

18

† 29

† 0†

32†

9† 1

12

13

#16

Self-

mon

itorin

g of

beh

avio

ur

- 90

71

87

56

~ 11

7

18

#24

Envi

ronm

enta

l res

truc

turin

g -

81

58~

70

86

10

10

20

#15

Gene

ralis

atio

n of

beh

avio

ur

- 85

71

75

63

~ 10

8

18

#2 In

form

atio

n to

the

indi

vidu

al

- 65

~ 71

68

75

11

9

20

#6 G

oal s

ettin

g (o

utco

me)

-

58~

67

68

75

16

9 25

#36

Stre

ss m

anag

emen

t /em

otio

nal c

ontr

ol tr

aini

ng

- 26

† 91

71

76

18

8

26

#11

Revi

ew o

utco

me

goal

s -

94

42~

76

31†

13

9 22

#33

Self-

talk

-

31†

67

80

54~

13

10

23

#39

Gene

ral c

omm

unica

tion

skill

s tra

inin

g -

67

17†

60~

75

10

9 19

#30

Iden

tifica

tion

as ro

le m

odel

-

73

9† 68

44

~ 10

11

21

#4 N

orm

ativ

e in

form

atio

n ot

hers

' beh

avio

ur

- 16

† 25

† 72

46

~ 14

12

26

#28

Facil

itate

socia

l com

paris

on

- 16

† 40

~ 27

† 70

16

16

32

#25

Beha

viou

ral c

ontr

act

- 55

~ 29

† 20

† 48

~ 13

25

38

#32

Fear

aro

usal

-

29†

33†

31†

35~

6 17

23

#34

Use

of im

ager

y -

13†

33†

48~

0† 7

10

17

Tabl

e 6

Ove

rvie

w o

f giv

en co

mm

ents

in to

tal

M

etho

ds/

valid

ity

Feas

ibili

ty

Rela

tive

tech

niqu

es

Clie

nt

char

acte

ristic

s Su

ppor

t fro

m

othe

rs

Tota

l no.

of

com

men

ts (m

ean)

No. o

f com

men

ts fo

r sui

tabl

e BC

Ts, n

=24

(mea

n*)

8 (0

.33)

75

(3.1

3)

34 (1

.42)

83

(3.4

6)

52 (2

.17)

25

2 (1

0.5)

No

. of c

omm

ents

for u

nsui

tabl

e BC

Ts, n

=1

0 4

1 8

0 13

No

. of c

omm

ents

for B

CTs w

ithou

t con

sens

us, n

=15

(mea

n*)

23 (1

.53)

10

8 (7

.2)

49 (3

.27)

15

0 (1

0)

18 (1

.2)

348

(23.

2)

Tota

l num

ber o

f com

men

ts

31

187

84

241

70

613

* =

mea

n no

. of c

omm

ents

for s

uita

ble

BCTs

or B

CTs f

or w

hich

cons

ensu

s was

not

foun

d

138541-Willems_BNW.indd 106 31-10-19 10:08

107

107

#27

Use

of fo

llow

-up

prom

pts

70

71

67

75

67

8 7

15

#31

Prom

pt a

ntici

pate

d re

gret

18

† 29

† 0†

32†

9† 1

12

13

#16

Self-

mon

itorin

g of

beh

avio

ur

- 90

71

87

56

~ 11

7

18

#24

Envi

ronm

enta

l res

truc

turin

g -

81

58~

70

86

10

10

20

#15

Gene

ralis

atio

n of

beh

avio

ur

- 85

71

75

63

~ 10

8

18

#2 In

form

atio

n to

the

indi

vidu

al

- 65

~ 71

68

75

11

9

20

#6 G

oal s

ettin

g (o

utco

me)

-

58~

67

68

75

16

9 25

#36

Stre

ss m

anag

emen

t /em

otio

nal c

ontr

ol tr

aini

ng

- 26

† 91

71

76

18

8

26

#11

Revi

ew o

utco

me

goal

s -

94

42~

76

31†

13

9 22

#33

Self-

talk

-

31†

67

80

54~

13

10

23

#39

Gene

ral c

omm

unica

tion

skill

s tra

inin

g -

67

17†

60~

75

10

9 19

#30

Iden

tifica

tion

as ro

le m

odel

-

73

9† 68

44

~ 10

11

21

#4 N

orm

ativ

e in

form

atio

n ot

hers

' beh

avio

ur

- 16

† 25

† 72

46

~ 14

12

26

#28

Facil

itate

socia

l com

paris

on

- 16

† 40

~ 27

† 70

16

16

32

#25

Beha

viou

ral c

ontr

act

- 55

~ 29

† 20

† 48

~ 13

25

38

#32

Fear

aro

usal

-

29†

33†

31†

35~

6 17

23

#34

Use

of im

ager

y -

13†

33†

48~

0† 7

10

17

Tabl

e 6

Ove

rvie

w o

f giv

en co

mm

ents

in to

tal

M

etho

ds/

valid

ity

Feas

ibili

ty

Rela

tive

tech

niqu

es

Clie

nt

char

acte

ristic

s Su

ppor

t fro

m

othe

rs

Tota

l no.

of

com

men

ts (m

ean)

No. o

f com

men

ts fo

r sui

tabl

e BC

Ts, n

=24

(mea

n*)

8 (0

.33)

75

(3.1

3)

34 (1

.42)

83

(3.4

6)

52 (2

.17)

25

2 (1

0.5)

No

. of c

omm

ents

for u

nsui

tabl

e BC

Ts, n

=1

0 4

1 8

0 13

No

. of c

omm

ents

for B

CTs w

ithou

t con

sens

us, n

=15

(mea

n*)

23 (1

.53)

10

8 (7

.2)

49 (3

.27)

15

0 (1

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187

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138541-Willems_BNW.indd 107 31-10-19 10:08

108

4 | DISCUSSION

In this Delphi study, the present authors found that the mean total consensus amongst professionals who were

working with individuals with mild intellectual disabilities considered 24 out of 40 BCTs suitable for supporting

these individuals for changing their lifestyles. BCTs considered to be most suitable for this were as follows: barrier

identification, set graded tasks, reward effort towards behaviour, motivational interviewing and action planning.

No evidence was found for differences in consensus between groups of professionals.

The present authors ascertained that the BCTs that were considered to be most suitable for changing lifestyle

behaviour were as follows: “Barrier identification”, “Set graded tasks”, “Reward effort towards behaviour”,

“Motivational interviewing” and “Action planning”. According to the literature, suitable BCTs for individuals with

mild intellectual disabilities may need to target monitoring of behaviour (Hutzler & Korsensky, 2010), self‐efficacy

(Bodde & Seo, 2009; Kuijken et al., 2016; Mallet, Guillard, Huillard, Dubertret, & Limosin, 2016; Young, Naji, &

Kroll, 2012) and rewards towards behaviour (Skinner, 1938; Temple, 2009; Van Schijndel‐Speet, Evenhuis, Van

Wijck, & Echteld, 2014); these need to be combined with social support (Bodde & Seo, 2009; Kuijken et al., 2016;

Mallet et al., 2016; Young et al., 2012). Less suitable BCTs may be those targeting an increase in knowledge and

understanding or appealing to executive functioning (Kuijken et al., 2016). Our findings are mostly in accordance

with the literature since the present authors found that BCTs that targeted rewards were considered most

suitable. However, the present authors also found consensus for BCTs that targeted executive functioning (BCTs

targeting planning). An explanation for the suitability of these BCTs or those targeting executive functioning or

cognitive functioning is that these BCTs may be suitable when used in combination with support from others. A

category “support from others” was defined in the results since there were many comments about the need of

social support from others for the suitability of techniques. This finding confirms the current knowledge that a

multidimensional approach is important for lifestyle changes for individuals with mild intellectual disabilities,

including tailoring to client characteristics and support from others (Hutzler & Korsensky, 2010; National Institute

for Health and Clinical Excellence (NICE) 2007; Willems et al., 2018).

A review about the use of BCTs in lifestyle change interventions for people with intellectual disabilities found

that the BCTs “Provide information on consequences of behaviour in general” and “Plan social support/social

change” were most frequently used (Willems et al., 2017). However, according to professionals in this Delphi

study, these BCTs were not the most suitable. For future research and the design of new interventions, it may be

important to investigate step-by‐step what the efficacy is of individual BCTs. The authors recommend to begin

researching the BCTs that were considered as most suitable according to professionals working with people with

mild intellectual disabilities. This may lead to new insights about the use of BCTs in changing lifestyle of people

with mild intellectual disabilities.

The present authors compared the answers of the four groups (professional caregivers, behavioural scientists,

allied health professionals and intellectual disability physicians) and did not find significant differences.

Consensus differed for only seven BCTs. Behavioural scientists were considered as being experts of behavioural

change due to education, working position and experience. Therefore, the answers of behavioural scientists were

109

compared with the answers of the other groups. Two BCTs (“General communication skill training” and

“Identification as a role model”) were considered unsuitable by behavioural scientists while the other

professional groups considered the technique suitable or did not reach consensus. This indicates that,

independent of the working position and education level of professionals, no major difference in rating the

suitability of BCTs was determined for lifestyle changes in individuals with mild intellectual disabilities.

A substantial number of additional comments were provided by the participants that appear to be related to the

suitability of a BCT. The BCTs with the highest mean consensus for all of the groups received fewer comments

than unsuitable BCTs. Apparently, these BCTs needed no further explanation, the feasibility was relatively good,

and the suitability was less dependent on the use of relative techniques, client characteristics and support from

others. This indicates that these BCTs (“Barrier identification,” “Set graded tasks,” “Reward effort towards

behaviour,” “Motivational interviewing” and “Action planning”) are suitable for use in the daily practice of

lifestyle changes in individuals with intellectual disabilities.

4.1 | Strengths and weaknesses

A cut‐off score of 66.7% was used for consensus about the suitability of BCTs. This cut‐off score could not be

supported by literature considering the fact that there is no consensus in the literature regarding the best cut‐

off score (Diamond et al., 2014). Since this is the first study about the suitability of BCTs in lifestyle changes for

individuals with mild intellectual disabilities, the present authors did not want to be too rigorous by excluding

BCTs from being categorized as suitable. The same mild cut‐off score was used for categorizing unsuitable BCTs

which meant that they were categorized as unsuitable if the mild cut‐off score was reached. However, the

present authors found 16 BCTs with a high mean percentage (>80%) of consensus over all of the groups of

participants which may indicate that these BCTs were reliably judged as suitable and relevant for future research.

The BCTs in which most consensus was reached may be used to design new lifestyle change interventions for

individuals with mild intellectual disabilities. However, the level of suitability is not measured in this study. Since

this and the level of consensus of suitability are not the same, our findings are tentative and require further

investigation. Since the field of lifestyle change for individuals with (mild) intellectual disabilities is still in its

infancy, these results can provide guidance for future research.

Questionnaires from both Delphi rounds had a substantial number of participants which indicates a wide reach

of the study. It was not possible to calculate the total number of people who were approached for participation

in this study because the present authors used indirect methods of recruitment. The high consensus rates in the

groups may mean that there was probably data saturation (Guest, Bunce, & Johnson, 2006). Although the study

reach was wide, the questionnaires were not completed by all of the respondents. This may mean that the

awareness and/or knowledge about behaviour change may be small with professionals working with individuals

with mild intellectual disabilities or that the BCTs are still too theoretical. Nevertheless, the present authors used

examples for each BCT from the daily practice of professionals working with individuals with mild intellectual

disabilities to overcome this issue.

138541-Willems_BNW.indd 108 31-10-19 10:08

108

4 | DISCUSSION

In this Delphi study, the present authors found that the mean total consensus amongst professionals who were

working with individuals with mild intellectual disabilities considered 24 out of 40 BCTs suitable for supporting

these individuals for changing their lifestyles. BCTs considered to be most suitable for this were as follows: barrier

identification, set graded tasks, reward effort towards behaviour, motivational interviewing and action planning.

No evidence was found for differences in consensus between groups of professionals.

The present authors ascertained that the BCTs that were considered to be most suitable for changing lifestyle

behaviour were as follows: “Barrier identification”, “Set graded tasks”, “Reward effort towards behaviour”,

“Motivational interviewing” and “Action planning”. According to the literature, suitable BCTs for individuals with

mild intellectual disabilities may need to target monitoring of behaviour (Hutzler & Korsensky, 2010), self‐efficacy

(Bodde & Seo, 2009; Kuijken et al., 2016; Mallet, Guillard, Huillard, Dubertret, & Limosin, 2016; Young, Naji, &

Kroll, 2012) and rewards towards behaviour (Skinner, 1938; Temple, 2009; Van Schijndel‐Speet, Evenhuis, Van

Wijck, & Echteld, 2014); these need to be combined with social support (Bodde & Seo, 2009; Kuijken et al., 2016;

Mallet et al., 2016; Young et al., 2012). Less suitable BCTs may be those targeting an increase in knowledge and

understanding or appealing to executive functioning (Kuijken et al., 2016). Our findings are mostly in accordance

with the literature since the present authors found that BCTs that targeted rewards were considered most

suitable. However, the present authors also found consensus for BCTs that targeted executive functioning (BCTs

targeting planning). An explanation for the suitability of these BCTs or those targeting executive functioning or

cognitive functioning is that these BCTs may be suitable when used in combination with support from others. A

category “support from others” was defined in the results since there were many comments about the need of

social support from others for the suitability of techniques. This finding confirms the current knowledge that a

multidimensional approach is important for lifestyle changes for individuals with mild intellectual disabilities,

including tailoring to client characteristics and support from others (Hutzler & Korsensky, 2010; National Institute

for Health and Clinical Excellence (NICE) 2007; Willems et al., 2018).

A review about the use of BCTs in lifestyle change interventions for people with intellectual disabilities found

that the BCTs “Provide information on consequences of behaviour in general” and “Plan social support/social

change” were most frequently used (Willems et al., 2017). However, according to professionals in this Delphi

study, these BCTs were not the most suitable. For future research and the design of new interventions, it may be

important to investigate step-by‐step what the efficacy is of individual BCTs. The authors recommend to begin

researching the BCTs that were considered as most suitable according to professionals working with people with

mild intellectual disabilities. This may lead to new insights about the use of BCTs in changing lifestyle of people

with mild intellectual disabilities.

The present authors compared the answers of the four groups (professional caregivers, behavioural scientists,

allied health professionals and intellectual disability physicians) and did not find significant differences.

Consensus differed for only seven BCTs. Behavioural scientists were considered as being experts of behavioural

change due to education, working position and experience. Therefore, the answers of behavioural scientists were

109

compared with the answers of the other groups. Two BCTs (“General communication skill training” and

“Identification as a role model”) were considered unsuitable by behavioural scientists while the other

professional groups considered the technique suitable or did not reach consensus. This indicates that,

independent of the working position and education level of professionals, no major difference in rating the

suitability of BCTs was determined for lifestyle changes in individuals with mild intellectual disabilities.

A substantial number of additional comments were provided by the participants that appear to be related to the

suitability of a BCT. The BCTs with the highest mean consensus for all of the groups received fewer comments

than unsuitable BCTs. Apparently, these BCTs needed no further explanation, the feasibility was relatively good,

and the suitability was less dependent on the use of relative techniques, client characteristics and support from

others. This indicates that these BCTs (“Barrier identification,” “Set graded tasks,” “Reward effort towards

behaviour,” “Motivational interviewing” and “Action planning”) are suitable for use in the daily practice of

lifestyle changes in individuals with intellectual disabilities.

4.1 | Strengths and weaknesses

A cut‐off score of 66.7% was used for consensus about the suitability of BCTs. This cut‐off score could not be

supported by literature considering the fact that there is no consensus in the literature regarding the best cut‐

off score (Diamond et al., 2014). Since this is the first study about the suitability of BCTs in lifestyle changes for

individuals with mild intellectual disabilities, the present authors did not want to be too rigorous by excluding

BCTs from being categorized as suitable. The same mild cut‐off score was used for categorizing unsuitable BCTs

which meant that they were categorized as unsuitable if the mild cut‐off score was reached. However, the

present authors found 16 BCTs with a high mean percentage (>80%) of consensus over all of the groups of

participants which may indicate that these BCTs were reliably judged as suitable and relevant for future research.

The BCTs in which most consensus was reached may be used to design new lifestyle change interventions for

individuals with mild intellectual disabilities. However, the level of suitability is not measured in this study. Since

this and the level of consensus of suitability are not the same, our findings are tentative and require further

investigation. Since the field of lifestyle change for individuals with (mild) intellectual disabilities is still in its

infancy, these results can provide guidance for future research.

Questionnaires from both Delphi rounds had a substantial number of participants which indicates a wide reach

of the study. It was not possible to calculate the total number of people who were approached for participation

in this study because the present authors used indirect methods of recruitment. The high consensus rates in the

groups may mean that there was probably data saturation (Guest, Bunce, & Johnson, 2006). Although the study

reach was wide, the questionnaires were not completed by all of the respondents. This may mean that the

awareness and/or knowledge about behaviour change may be small with professionals working with individuals

with mild intellectual disabilities or that the BCTs are still too theoretical. Nevertheless, the present authors used

examples for each BCT from the daily practice of professionals working with individuals with mild intellectual

disabilities to overcome this issue.

138541-Willems_BNW.indd 109 31-10-19 10:08

110

An important strength of the study is the randomized sequence of the questions the present authors used to

avoid question order bias and differences in answer ratings for each BCT. The randomization made it possible to

use the answers of participants who did not complete the questionnaire.

4.2 | Recommendations

To our knowledge, this is the first study exploring the suitability of BCTs for supporting lifestyle changes in

individuals with mild intellectual disabilities. Twenty‐four suitable BCTs were identified and might be applied for

doing so. The present authors did not study the suitability of combinations of BCTs since this was an explorative

study. In practice, BCTs may often not have been used solely. However, the authors recommend step‐by‐step

research to determine the efficacy of individual BCTs using a multidimensional approach for a solid design of an

effective lifestyle change intervention. Increased awareness and knowledge about behaviour change and lifestyle

changes in individuals with mild intellectual disabilities are necessary since this is important for the

implementation of a multidimensional approach. Additional research is necessary on the combination and the

use of BCTs in daily support of these individuals. Since the present authors did not study the effectiveness of

BCTs, more research is also needed to determine this in supporting lifestyle changes in individuals with mild


4.3 | Conclusion

This explorative Delphi study identified 24 BCTs that are suitable for encouraging lifestyle changes in individuals

with mild intellectual disabilities. The study had a wide reach under professionals (given the number of

participants) working with this population, and the present authors determined that professionals reached

consensus about the suitability of BCTs regardless of their working position. The number of comments offered

for a BCT might indicate the suitability of it inversely; fewer comments indicate higher suitability for that BCTs

and more comments indicate lower suitability. Support from others appears to be important for the suitability

of BCTs.

CONFLICT OF INTEREST


111

REFERENCES


Psychology, 27(3), 379–387.



American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders: DSM‐5 (5th

Ed.). Arlington, VA: American Psychiatric Association.

Bartholomew, L. K., & Mullen, P. D. (2011). Five roles for using theory and evidence in the design and testing of

behavior change interventions. Journal of Public Health Dentistry, 71, S20–S33.

https://doi. org/10.1111/j.1752‐7325.2011.00223.x

Becker, G. E., & Roberts, T. (2009). Do we agree? Using a Delphi technique to develop consensus on skills of

hand expression. Journal of Human Lactation, 25(2), 220–225.

https://doi.org/10.1177/0890334409333679

Bird, E. L., Baker, G., Mutrie, N., Ogilvie, D., Sahlqvist, S., & Powell, J. (2013). Behavior change techniques used

to promote walking and cycling: A systematic review. Health Psychology, 32(8), 829–838.

https://doi.org/10.1037/a0032078

Bodde, A. E., & Seo, D. C. (2009). A review of social and environmental barriers to physical activity for adults

with intellectual disabilities. Disability and Health Journal, 2(2), 57–66.


Boulkedid, R., Abdoul, H., Loustau, M., Sibony, O., & Alberti, C. (2011). Using and reporting the Delphi method

for selecting healthcare quality indicators: A systematic review. PLoS ONE, 6(6), e20476.

https:// doi.org/10.1371/journal.pone.0020476

De Meyrick, J. (2003). The Delphi method and health research. Health Education, 103(1), 7–16.

https://doi.org/ 10.1108/09654280310459112

Diamond, I. R., Grant, R. C., Feldman, B. M., Pencharz, P. B., Ling, S. C., Moore, A. M., & Wales, P. W. (2014).

Defining consensus: A systematic review recommends methodologic criteria for reporting of Delphi

studies. Journal of Clinical Epidemiology, 67(4), 401–409.

https://doi.org/10.1016/j.jclinepi.2013.12.002




https://doi.org/10.1186/1471-2458-11-119

138541-Willems_BNW.indd 110 31-10-19 10:08

110

An important strength of the study is the randomized sequence of the questions the present authors used to

avoid question order bias and differences in answer ratings for each BCT. The randomization made it possible to

use the answers of participants who did not complete the questionnaire.


To our knowledge, this is the first study exploring the suitability of BCTs for supporting lifestyle changes in

individuals with mild intellectual disabilities. Twenty‐four suitable BCTs were identified and might be applied for

doing so. The present authors did not study the suitability of combinations of BCTs since this was an explorative

study. In practice, BCTs may often not have been used solely. However, the authors recommend step‐by‐step

research to determine the efficacy of individual BCTs using a multidimensional approach for a solid design of an

effective lifestyle change intervention. Increased awareness and knowledge about behaviour change and lifestyle

changes in individuals with mild intellectual disabilities are necessary since this is important for the

implementation of a multidimensional approach. Additional research is necessary on the combination and the

use of BCTs in daily support of these individuals. Since the present authors did not study the effectiveness of

BCTs, more research is also needed to determine this in supporting lifestyle changes in individuals with mild


4.3 | Conclusion

This explorative Delphi study identified 24 BCTs that are suitable for encouraging lifestyle changes in individuals

with mild intellectual disabilities. The study had a wide reach under professionals (given the number of

participants) working with this population, and the present authors determined that professionals reached

consensus about the suitability of BCTs regardless of their working position. The number of comments offered

for a BCT might indicate the suitability of it inversely; fewer comments indicate higher suitability for that BCTs

and more comments indicate lower suitability. Support from others appears to be important for the suitability

of BCTs.



111

REFERENCES


Psychology, 27(3), 379–387.



American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders: DSM‐5 (5th

Ed.). Arlington, VA: American Psychiatric Association.

Bartholomew, L. K., & Mullen, P. D. (2011). Five roles for using theory and evidence in the design and testing of

behavior change interventions. Journal of Public Health Dentistry, 71, S20–S33.

https://doi. org/10.1111/j.1752‐7325.2011.00223.x

Becker, G. E., & Roberts, T. (2009). Do we agree? Using a Delphi technique to develop consensus on skills of

hand expression. Journal of Human Lactation, 25(2), 220–225.

https://doi.org/10.1177/0890334409333679

Bird, E. L., Baker, G., Mutrie, N., Ogilvie, D., Sahlqvist, S., & Powell, J. (2013). Behavior change techniques used

to promote walking and cycling: A systematic review. Health Psychology, 32(8), 829–838.

https://doi.org/10.1037/a0032078

Bodde, A. E., & Seo, D. C. (2009). A review of social and environmental barriers to physical activity for adults

with intellectual disabilities. Disability and Health Journal, 2(2), 57–66.


Boulkedid, R., Abdoul, H., Loustau, M., Sibony, O., & Alberti, C. (2011). Using and reporting the Delphi method

for selecting healthcare quality indicators: A systematic review. PLoS ONE, 6(6), e20476.

https:// doi.org/10.1371/journal.pone.0020476

De Meyrick, J. (2003). The Delphi method and health research. Health Education, 103(1), 7–16.

https://doi.org/ 10.1108/09654280310459112

Diamond, I. R., Grant, R. C., Feldman, B. M., Pencharz, P. B., Ling, S. C., Moore, A. M., & Wales, P. W. (2014).

Defining consensus: A systematic review recommends methodologic criteria for reporting of Delphi

studies. Journal of Clinical Epidemiology, 67(4), 401–409.

https://doi.org/10.1016/j.jclinepi.2013.12.002




https://doi.org/10.1186/1471-2458-11-119

138541-Willems_BNW.indd 111 31-10-19 10:08

112

Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough? An experiment with data

saturation and variability. Field Methods, 18(1), 59–82. https://doi.org/10.1177/1525822X05279903




Hothorn, T., Bretz, F., & Westfall, P. (2008). Simultaneous inference in general parametric models.

Biometrical journal, 50(3), 346-363. https://doi.org/10.1002/bimj.200810425

Hutzler, Y., & Korsensky, O. (2010). Motivational correlates of physical activity in persons with an intellectual

disability: A systematic literature review. Journal of Intellectual Disability Research, 54(9), 767–786.

https://doi.org/10.1111/j.1365‐2788.2010.01313.x





Mallet, J., Guillard, V., Huillard, O., Dubertret, C., & Limosin, F. (2016). Effectiveness of cognitive behavioural

therapy in the treatment of a phobic disorder in a patient with Down syndrome and early Alzheimer's

disease. European Psychiatry, 33, S476. https://doi. org/10.1016/j.eurpsy.2016.01.1739

McGraw, K. O. & Wong, S. P. (1996). Forming Inferences about some intraclass correlation coefficients.

Psychological Methods, 1(1), 30-46. https://doi.org/10.1037/1082‐989X.1.1.30



https://doi.org/10.1111/j.1467‐789X.2006.00296.x


and physical activity interventions: A meta-regression. Health Psychology, 28(6), 690–701.

https:// doi.org/10.1037/a0016136

Michie, S., Ashford, S., Sniehotta, F.F., Dombrowski, S.U., Bishop, A., & French, D.P. (2011). A refined

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Michie, S., Richardson, M., Johnston, M., Abraham, C., Francis, J., Hardeman, W., Eccles, M. P., Cane, J. &

Wood, C. E. (2013). The behavior change technique taxonomy (v1) of 93 hierarchically clustered

techniques: building an international consensus for the reporting of behaviour change interventions.

Annals of Behavioral Medicine, 46(1), 81-95.

113

Milat, A. J., King, L., Bauman, A. E., & Redman, S. (January 01, 2013). The concept of scalability: increasing the

scale and potential adoption of health promotion interventions into policy and practice. Health

Promotion International, 28, 3, 285-298.https://doi.org/10.1093/heapro/dar097

National Institute for Health and Clinical Excellence (NICE) (2007). Behaviour change at population, community

and individual levels. London: NICE.



systematic review and meta-analysis. International Journal of Behavioral Nutrition and Physical

Activity, 10(29), 1-15.https://doi. org/10.1186/1479‐5868‐10‐29

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for Statistical Computing. https:// www.R‐project.org/

Revelle, W., & Zinbarg, R. E. (2009). Coefficients alpha, beta, omega and the glb: Comments on Sijtsma.

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Rothman, A. J. (2004). Is there nothing more practical than a good theory? Why, innovations and advances in

health behavior change will arise if interventions are used to test and refine theory. International

Journal of Behavioral Nutrition and Physical Activity, 1(11), 1–7.

http://www.ijbnpa.org/content/1/1/11.

Skinner, B. F. (1938). The behaviour of organisms. New York, NY: Appleton‐Century‐Crofts.

Temple, V. A. (2009). Factors associated with high levels of physical activity among adults with intellectual

disability. International Journal of Rehabilitation Research, 32, 89–92.

https://doi.org/10.1097/ MRR.0b013e328307f5a0









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Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough? An experiment with data

saturation and variability. Field Methods, 18(1), 59–82. https://doi.org/10.1177/1525822X05279903




Hothorn, T., Bretz, F., & Westfall, P. (2008). Simultaneous inference in general parametric models.

Biometrical journal, 50(3), 346-363. https://doi.org/10.1002/bimj.200810425

Hutzler, Y., & Korsensky, O. (2010). Motivational correlates of physical activity in persons with an intellectual

disability: A systematic literature review. Journal of Intellectual Disability Research, 54(9), 767–786.

https://doi.org/10.1111/j.1365‐2788.2010.01313.x





Mallet, J., Guillard, V., Huillard, O., Dubertret, C., & Limosin, F. (2016). Effectiveness of cognitive behavioural

therapy in the treatment of a phobic disorder in a patient with Down syndrome and early Alzheimer's

disease. European Psychiatry, 33, S476. https://doi. org/10.1016/j.eurpsy.2016.01.1739

McGraw, K. O. & Wong, S. P. (1996). Forming Inferences about some intraclass correlation coefficients.

Psychological Methods, 1(1), 30-46. https://doi.org/10.1037/1082‐989X.1.1.30



https://doi.org/10.1111/j.1467‐789X.2006.00296.x



https:// doi.org/10.1037/a0016136




https://doi.org/10.1080/08870446.2010.540664

Michie, S., Richardson, M., Johnston, M., Abraham, C., Francis, J., Hardeman, W., Eccles, M. P., Cane, J. &

Wood, C. E. (2013). The behavior change technique taxonomy (v1) of 93 hierarchically clustered

techniques: building an international consensus for the reporting of behaviour change interventions.

Annals of Behavioral Medicine, 46(1), 81-95.

113

Milat, A. J., King, L., Bauman, A. E., & Redman, S. (January 01, 2013). The concept of scalability: increasing the

scale and potential adoption of health promotion interventions into policy and practice. Health

Promotion International, 28, 3, 285-298.https://doi.org/10.1093/heapro/dar097

National Institute for Health and Clinical Excellence (NICE) (2007). Behaviour change at population, community

and individual levels. London: NICE.



systematic review and meta-analysis. International Journal of Behavioral Nutrition and Physical

Activity, 10(29), 1-15.https://doi. org/10.1186/1479‐5868‐10‐29


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Prentice Hall.

R Core Team (2017). R: A language and environment for statistical computing. Vienna, Austria: R Foundation

for Statistical Computing. https:// www.R‐project.org/

Revelle, W., & Zinbarg, R. E. (2009). Coefficients alpha, beta, omega and the glb: Comments on Sijtsma.

Psychometrika, 74(1), 145–154. https://doi.org/10.1007/s11336‐008‐9102‐z

Rothman, A. J. (2004). Is there nothing more practical than a good theory? Why, innovations and advances in

health behavior change will arise if interventions are used to test and refine theory. International

Journal of Behavioral Nutrition and Physical Activity, 1(11), 1–7.

http://www.ijbnpa.org/content/1/1/11.

Skinner, B. F. (1938). The behaviour of organisms. New York, NY: Appleton‐Century‐Crofts.

Temple, V. A. (2009). Factors associated with high levels of physical activity among adults with intellectual

disability. International Journal of Rehabilitation Research, 32, 89–92.

https://doi.org/10.1097/ MRR.0b013e328307f5a0









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Research in Intellectual Disabilities, 31(6), 949-961. https://doi.org/10.1111/jar.12463

Young, A. F., Naji, S., & Kroll, T. (2012). Support for self-management of cardiovascular disease by people with

learning disabilities. Family Practice, 29(4), 467-475. https://doi.org/10.1093/fampra/cmr106

115

APPENDIX – CALO-RE-NL Taxonomy

1) Speak to the client about the consequences of lifestyle behaviour. These may be positive and negative consequences. For

example: you might tell the client that if they switch to a healthier diet they will feel more energetic during the daytime.

2) Speak to the client about the consequences of lifestyle behaviour specifically tailored to them. These may be positive and

negative consequences. For example: you might tell a client with diabetes that if they adopt a healthier diet, their blood sugar

levels will not be as high.

3) Speak to the client about how others feel about the client’s lifestyle behaviour. For example: you might tell the client that

a lot of people approve of their eating healthy food.

4) Speak to the client about other people’s lifestyle behaviour. For example: you might tell the client that a lot of young

people eat healthy meals.

5) Encourage the client to set a behavioural goal for lifestyle behaviour. For example: Encourage the client to set a lifestyle

behaviour goal, such as the goal to cook one healthy meal this week.

6) Encourage the client to set a result-oriented lifestyle behaviour goal. For example: Encourage the client to set a result-

oriented goal, such as the goal to lose 0.5 kg of weight within one week.

7) Encourage the client to plan lifestyle behaviour. For example: If the goal is ‘to cook a healthy meal every week’, you might

encourage the client to plan when they cook that healthy meal.

8) Help the client consider potential lifestyle behaviour barriers and solutions. For example: You might help the client think

about what prevents them from eating healthy food and come with ways of how to change that.

9) Encourage the client to come up with graded (lifestyle behaviour) tasks. For example: If the goal is ‘to cook a healthy meal

every week’, you might encourage the client to come up with graded tasks, such as finding a recipe, making a shopping list,

doing the shopping and cooking the meal.

10) Encourage the client to review their (lifestyle behaviour) goals. For example: If the goal was ‘to cook a healthy meal every

week’, you might encourage the client to reflect on whether they actually did cook a healthy meal every week.

11) Encourage the client to evaluate a result-oriented goal. For example: If the goal was ‘to lose 0.5 kg of weight within one

week’, you might encourage the client to evaluate to what extent they did lose 0.5 kg over the past week.

12) Reward the client for progress they have made to achieve the goal. For example: If the goal is ‘to cook a healthy meal

every week’, the client will receive a reward (which may also simply be a compliment) once they draw up their shopping list.

13) Reward the client for performing the lifestyle behaviour. For example: the client will receive a reward for achieving the

goal ‘to cook a healthy meal every week’.

14) Reward the client so they learn to perform the lifestyle behaviour. The client will first be rewarded for steps made toward

achieving the goal and subsequently they will only be rewarded for performance of the intended lifestyle behaviour. For

example: If the goal is ‘to cook a healthy meal every week’, the client is first rewarded for finding a recipe and subsequently

for doing the shopping for the meal. Eventually, the client is only rewarded for cooking a healthy meal every week.

15) Encourage the client to perform the specified lifestyle behaviour more often. For example: If the goal is ‘to cook a healthy

meal every week’, encourage the client to cook healthy meals more often.

16) Encourage the client to keep a record of how they perform the specified behaviour(s). For example: If the goal is ‘to cook

a healthy meal every week’, encourage the client to keep a record of when they cooked a healthy meal and what they cooked

for themselves.

17) Encourage the client to keep a record of the results of their lifestyle behaviour. For example: If the goal is ‘to lose 0.5 kg

of weight within one week’, then you should encourage the client to monitor their weight and keep a record of their progress.

138541-Willems_BNW.indd 114 31-10-19 10:08

114



Whitehead, D. (2008). An international Delphi study examining health promotion and health education in

nursing practice, education and policy. Journal of Clinical Nursing, 17(7), 891–900.

https://doi. org/10.1111/j.1365‐2702.2007.02079.x





Research, 26(2), 308–322.



review. Research in Developmental Disabilities, 60, 256–268



Melville, C. A. (2018). Effects of Lifestyle Change Interventions for People with Intellectual

Disabilities: Systematic Review and Meta-Analysis of Randomized Controlled Trials. Journal of Applied

Research in Intellectual Disabilities, 31(6), 949-961. https://doi.org/10.1111/jar.12463

Young, A. F., Naji, S., & Kroll, T. (2012). Support for self-management of cardiovascular disease by people with

learning disabilities. Family Practice, 29(4), 467-475. https://doi.org/10.1093/fampra/cmr106

115

APPENDIX – CALO-RE-NL Taxonomy

1) Speak to the client about the consequences of lifestyle behaviour. These may be positive and negative consequences. For

example: you might tell the client that if they switch to a healthier diet they will feel more energetic during the daytime.

2) Speak to the client about the consequences of lifestyle behaviour specifically tailored to them. These may be positive and

negative consequences. For example: you might tell a client with diabetes that if they adopt a healthier diet, their blood sugar

levels will not be as high.

3) Speak to the client about how others feel about the client’s lifestyle behaviour. For example: you might tell the client that

a lot of people approve of their eating healthy food.

4) Speak to the client about other people’s lifestyle behaviour. For example: you might tell the client that a lot of young

people eat healthy meals.

5) Encourage the client to set a behavioural goal for lifestyle behaviour. For example: Encourage the client to set a lifestyle

behaviour goal, such as the goal to cook one healthy meal this week.

6) Encourage the client to set a result-oriented lifestyle behaviour goal. For example: Encourage the client to set a result-

oriented goal, such as the goal to lose 0.5 kg of weight within one week.

7) Encourage the client to plan lifestyle behaviour. For example: If the goal is ‘to cook a healthy meal every week’, you might

encourage the client to plan when they cook that healthy meal.

8) Help the client consider potential lifestyle behaviour barriers and solutions. For example: You might help the client think

about what prevents them from eating healthy food and come with ways of how to change that.

9) Encourage the client to come up with graded (lifestyle behaviour) tasks. For example: If the goal is ‘to cook a healthy meal

every week’, you might encourage the client to come up with graded tasks, such as finding a recipe, making a shopping list,

doing the shopping and cooking the meal.

10) Encourage the client to review their (lifestyle behaviour) goals. For example: If the goal was ‘to cook a healthy meal every

week’, you might encourage the client to reflect on whether they actually did cook a healthy meal every week.

11) Encourage the client to evaluate a result-oriented goal. For example: If the goal was ‘to lose 0.5 kg of weight within one

week’, you might encourage the client to evaluate to what extent they did lose 0.5 kg over the past week.

12) Reward the client for progress they have made to achieve the goal. For example: If the goal is ‘to cook a healthy meal

every week’, the client will receive a reward (which may also simply be a compliment) once they draw up their shopping list.

13) Reward the client for performing the lifestyle behaviour. For example: the client will receive a reward for achieving the

goal ‘to cook a healthy meal every week’.

14) Reward the client so they learn to perform the lifestyle behaviour. The client will first be rewarded for steps made toward

achieving the goal and subsequently they will only be rewarded for performance of the intended lifestyle behaviour. For

example: If the goal is ‘to cook a healthy meal every week’, the client is first rewarded for finding a recipe and subsequently

for doing the shopping for the meal. Eventually, the client is only rewarded for cooking a healthy meal every week.

15) Encourage the client to perform the specified lifestyle behaviour more often. For example: If the goal is ‘to cook a healthy

meal every week’, encourage the client to cook healthy meals more often.

16) Encourage the client to keep a record of how they perform the specified behaviour(s). For example: If the goal is ‘to cook

a healthy meal every week’, encourage the client to keep a record of when they cooked a healthy meal and what they cooked

for themselves.

17) Encourage the client to keep a record of the results of their lifestyle behaviour. For example: If the goal is ‘to lose 0.5 kg

of weight within one week’, then you should encourage the client to monitor their weight and keep a record of their progress.

138541-Willems_BNW.indd 115 31-10-19 10:08

116

18) Encourage the client to reflect on past lifestyle behaviour successes. For example: If the goal is ‘to cook a healthy meal

every week’, then you should encourage the client to think back to the last time they cooked a healthy meal and how

successful they were.

19) Provide the client with feedback on the performance of their lifestyle behaviour. For example: If the goal is ‘to cook a

healthy meal every week’, then you should tell the client whether they have carried out the cooking task well and whether

they could make improvements.

20) Tell the client where and when they are able to perform the lifestyle behaviour. For example: If the goal is ‘to cook a

healthy meal every week’, you might give the client tips on what day and what time they would be best off cooking.

21) Explain to the client how they should perform the lifestyle behaviour. For example: If the goal is ‘to cook a healthy meal

every week’, explain to the client how they should follow a recipe in order to cook a meal.

22) Demonstrate the lifestyle behaviour to the client. For example: If the goal is ‘to cook a healthy meal every week’,

demonstrate to the client how to follow a recipe and how to cook a healthy meal using that method.

23) Teach the client to use environmental cues/prompts for lifestyle behaviour. For example: If the goal is ‘to cook a healthy

meal every week’, teach the client how to use an app that sends them a reminder to start cooking.

24) Encourage the client to change their environment in such a way as to help them perform the specified behaviour. For

example: If the goal is ‘to lose 0.5 kg of weight within a week’, then encourage the client to throw out any unhealthy snacks.

25) Agree on a behavioural contact with the client. The behavioural contract sets out that the client wishes to achieve a

specific (lifestyle) goal. For example: If the goal is ‘to cook a healthy meal every week’, then the behavioural contract will

state that the client intends to cook a healthy meal at least once a week

26) Encourage the client to practice and rehearse lifestyle behaviour. For example: If the goal is ‘to cook a healthy meal every

week’, then encourage the client to practise cooking healthy meals.

27) Encourage the client to perform the specified lifestyle behaviour. Use follow-up prompts and gradually reduce the

encouragement they receive. For example: If the goal is ‘to cook a healthy meal every week’, then first encourage the client

during daily conversations, gradually only provide encouragement on a weekly basis and finally only occasionally give them

encouragement.

28) Prompt the client to compare themselves with others. For example: If the goal is ‘to cook a healthy meal every week’,

then prompt the client to consider that their friends or family also cook healthy meals.

29) Encourage the client to ask others for social support or encouragement. For example: If the goal is ‘to cook a healthy meal

every week’, then encourage the client to find a friend, or ‘buddy’ that can help them do the cooking.

30) Help the client consider themselves as a role model. For example: If the goal is ‘to cook a healthy meal every week’, then

convince the client that they are a role model to their friends by cooking healthy food.

31) Prompt the client to consider how they would feel if they were not to perform the specified lifestyle behaviour and

whether they would regret that. For example: If the goal is ‘to lose 0.5 kg of weight within a week’, then have the client

consider whether they would regret eating unhealthy food and not lose weight as a result.

32) Provide the client with information on the risks of undesirable behavioural lifestyle behaviour to evoke fear in the client.

For example: You might tell the client that eating unhealthy food can lead to heart disease.

33) Encourage the client to use self-instruction and self-talk (aloud or silently) before or during performance of actions. This

can be used to encourage, support and maintain the behaviour. For example: If the goal is ‘to cook a healthy meal every

week’, then prompt the client to encourage themselves (“I can do this” / “I did well”).

34) Encourage the client to imagine that they are performing the lifestyle behaviour really well or that this type of lifestyle

behaviour is very easy. For example: If the goal is ‘to cook a healthy meal every week’, then prompt the client to imagine how

they would feel if they had already succeeded to cook a healthy meal.

117

35) Encourage the client to identify ways of how they could maintain new lifestyle behaviours and help the client identify

ways of avoiding or managing situations likely to result in readopting risk behaviour or failure. For example: If the goal is ‘to

cook a healthy meal every week’, then encourage the client to identify ways in which they can maintain the behaviour of

cooking a healthy meal every week.

36) Teach the client techniques to reduce anxiety or stress. For example: If the goal is ‘to cook a healthy meal every week’,

then teach the client to breathe in and out deeply before tasting an ingredient they do not like.

37) Introduce a coach to help the client using motivational interviewing. This is a specific method that involves the coach

prompting the client about the client’s lifestyle behaviour and helps them identify what they want or what they value.

38) Teach the client to manage their own time. For example: If the goal is ‘to cook a healthy meal every week’, then teach

the client to draw up a detailed plan of their free time, which includes scheduling the cooking of a healthy meal every week.

39) General communication skills training: the client is taught communication skills, for example through the use of role play

exercises or group discussions.

40) Encourage the client to look forward to a reward in the future. For example: If the goal is ‘to cook a healthy meal every

week’, then remind the client once they have cooked 3 healthy meals for themselves they will be allowed to take part in the

special dinner they planned where they cook for their family.

138541-Willems_BNW.indd 116 31-10-19 10:08

116

18) Encourage the client to reflect on past lifestyle behaviour successes. For example: If the goal is ‘to cook a healthy meal

every week’, then you should encourage the client to think back to the last time they cooked a healthy meal and how

successful they were.

19) Provide the client with feedback on the performance of their lifestyle behaviour. For example: If the goal is ‘to cook a

healthy meal every week’, then you should tell the client whether they have carried out the cooking task well and whether

they could make improvements.

20) Tell the client where and when they are able to perform the lifestyle behaviour. For example: If the goal is ‘to cook a

healthy meal every week’, you might give the client tips on what day and what time they would be best off cooking.

21) Explain to the client how they should perform the lifestyle behaviour. For example: If the goal is ‘to cook a healthy meal

every week’, explain to the client how they should follow a recipe in order to cook a meal.

22) Demonstrate the lifestyle behaviour to the client. For example: If the goal is ‘to cook a healthy meal every week’,

demonstrate to the client how to follow a recipe and how to cook a healthy meal using that method.

23) Teach the client to use environmental cues/prompts for lifestyle behaviour. For example: If the goal is ‘to cook a healthy

meal every week’, teach the client how to use an app that sends them a reminder to start cooking.

24) Encourage the client to change their environment in such a way as to help them perform the specified behaviour. For

example: If the goal is ‘to lose 0.5 kg of weight within a week’, then encourage the client to throw out any unhealthy snacks.

25) Agree on a behavioural contact with the client. The behavioural contract sets out that the client wishes to achieve a

specific (lifestyle) goal. For example: If the goal is ‘to cook a healthy meal every week’, then the behavioural contract will

state that the client intends to cook a healthy meal at least once a week

26) Encourage the client to practice and rehearse lifestyle behaviour. For example: If the goal is ‘to cook a healthy meal every

week’, then encourage the client to practise cooking healthy meals.

27) Encourage the client to perform the specified lifestyle behaviour. Use follow-up prompts and gradually reduce the

encouragement they receive. For example: If the goal is ‘to cook a healthy meal every week’, then first encourage the client

during daily conversations, gradually only provide encouragement on a weekly basis and finally only occasionally give them

encouragement.

28) Prompt the client to compare themselves with others. For example: If the goal is ‘to cook a healthy meal every week’,

then prompt the client to consider that their friends or family also cook healthy meals.

29) Encourage the client to ask others for social support or encouragement. For example: If the goal is ‘to cook a healthy meal

every week’, then encourage the client to find a friend, or ‘buddy’ that can help them do the cooking.

30) Help the client consider themselves as a role model. For example: If the goal is ‘to cook a healthy meal every week’, then

convince the client that they are a role model to their friends by cooking healthy food.

31) Prompt the client to consider how they would feel if they were not to perform the specified lifestyle behaviour and

whether they would regret that. For example: If the goal is ‘to lose 0.5 kg of weight within a week’, then have the client

consider whether they would regret eating unhealthy food and not lose weight as a result.

32) Provide the client with information on the risks of undesirable behavioural lifestyle behaviour to evoke fear in the client.

For example: You might tell the client that eating unhealthy food can lead to heart disease.

33) Encourage the client to use self-instruction and self-talk (aloud or silently) before or during performance of actions. This

can be used to encourage, support and maintain the behaviour. For example: If the goal is ‘to cook a healthy meal every

week’, then prompt the client to encourage themselves (“I can do this” / “I did well”).

34) Encourage the client to imagine that they are performing the lifestyle behaviour really well or that this type of lifestyle

behaviour is very easy. For example: If the goal is ‘to cook a healthy meal every week’, then prompt the client to imagine how

they would feel if they had already succeeded to cook a healthy meal.

117

35) Encourage the client to identify ways of how they could maintain new lifestyle behaviours and help the client identify

ways of avoiding or managing situations likely to result in readopting risk behaviour or failure. For example: If the goal is ‘to

cook a healthy meal every week’, then encourage the client to identify ways in which they can maintain the behaviour of

cooking a healthy meal every week.

36) Teach the client techniques to reduce anxiety or stress. For example: If the goal is ‘to cook a healthy meal every week’,

then teach the client to breathe in and out deeply before tasting an ingredient they do not like.

37) Introduce a coach to help the client using motivational interviewing. This is a specific method that involves the coach

prompting the client about the client’s lifestyle behaviour and helps them identify what they want or what they value.

38) Teach the client to manage their own time. For example: If the goal is ‘to cook a healthy meal every week’, then teach

the client to draw up a detailed plan of their free time, which includes scheduling the cooking of a healthy meal every week.

39) General communication skills training: the client is taught communication skills, for example through the use of role play

exercises or group discussions.

40) Encourage the client to look forward to a reward in the future. For example: If the goal is ‘to cook a healthy meal every

week’, then remind the client once they have cooked 3 healthy meals for themselves they will be allowed to take part in the

special dinner they planned where they cook for their family.

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Chapter 5

Behaviour change techniques used in lifestyle support of adults with mild


Mariël Willems

Johan de Jong

Annelies Overwijk



Aly Waninge


138541-Willems_BNW.indd 118 31-10-19 10:08

Chapter 5

Behaviour change techniques used in lifestyle support of adults with mild


Mariël Willems

Johan de Jong

Annelies Overwijk



Aly Waninge


138541-Willems_BNW.indd 119 31-10-19 10:08

120

ABSTRACT

Background: Professional caregivers are important in the daily support of lifestyle change in adults with mild

intellectual disabilities (ID). However, little is known about which behaviour change techniques (BCTs) they

actually use in changing their lifestyle behaviour.

Aim: This study aims to get insight in the use of behaviour change techniques (BCTs) in daily support for lifestyle

behaviour of adults with mild ID, using video observations.

Methods: Professional caregivers (N=14) were observed in their daily work, supporting adults with mild ID. Videos

are analysed using the Coventry Aberdeen London Refined (CALO-RE) taxonomy and BCTs used were coded on a

data report form.

Results: 21 out of 40 BCTs were used by professional caregivers. The BCTs “Information about others' approval”,

“Identification as role model”, “Rewards on successful behaviour”, “Review behavioural goals” and “Instructions

on how to perform the behaviour” were mostly used.

Conclusion: Professional caregivers used BCTs to support lifestyle behaviour of adults with mild ID. However, the

most promising BCTs were rarely used by professional caregivers.

121

1 | INTRODUCTION

Adults with intellectual disabilities (ID) often demonstrate an unhealthy lifestyle (McGuire, Daly, & Smyth, 2007).

They are often sedentary (Haveman et al., 2010), not physically active enough to gain substantial health benefits

(Draheim, Williams, & McCubbin, 2002; Frey & Chow, 2006; Lahtinen, Rintala, & Malin, 2007; Temple, Frey, &

Stanish, 2006), and they experience unhealthy dietary habits (Haveman et al., 2010; Hsieh, Rimmer, & Heller,

2014). Supporting lifestyle change for adults with intellectual disabilities is therefore important.

Lifestyle behaviour can be improved using behaviour change techniques (BCTs) in the general population (Bird

et al. 2013, Greaves et al., 2011; Michie, Abraham, Whittington, McAteer, & Gupta, 2009; Olander et al., 2013;

Williams & French, 2011). For adults with ID, we found frequent use of BCTs in lifestyle change interventions

although mostly implicit (Willems, Hilgenkamp, Havik, Waninge, & Melville, 2017).

According to professionals (professional caregivers, behavioural scientists, health professionals, intellectual

disability physicians) BCTs may be suitable to change lifestyle behaviour in adults with mild ID (Willems, Waninge,

De Jong, Hilgenkamp, & Van der Schans, 2019). Professional caregivers and relatives play an important role in

behaviour change for adults with ID (Alesi & Pepi, 2015; Davison, Jurkowski, Li, Kranz & Lawson, 2013; Grondhuis

& Aman, 2014; Heller, McCubbin, Drum, & Peterson, 2011; Hithersay, Strydom, Moulster, & Buszewicz, 2014;

James & Shireman, 2010; Melville, Hamilton, Hankey, Miller, & Boyle, 2007; Naaldenberg, Kuijken, van Dooren

& De Valk, 2013; Stanish, Temple & Frey, 2006; Van Schijndel-Speet, Evenhuis, Van Wijck, & Echteld, 2014). BCTs

that were considered most suitable were: “Barrier identification”, “Set graded tasks”, “Reward effort towards

behaviour”, “Motivational interviewing”, and “Action planning” (Willems et al., 2019). The perceived suitability

of BCTs was related to personal characteristics of adults with mild ID and the social support from others they

receive. However, to date, there is no insight into the actual use or application of BCTs in the daily support that

professional caregivers provide. This is instrumental knowledge for determining what BCT would be most

effective to focus on in a training or education program. In order to investigate the gaps of knowledge and

expertise, and to design meaningful support for professional caregivers, this observational study aims to observe

and determine the use of BCTs by professional caregivers, assisting lifestyle behaviour of adults with mild ID using

video observations. If BCTs are used by professional caregivers, this study will also investigate whether there is

any relation between the BCTs used and characteristics of the users.

2 | METHODS

2.1 | Design

During this observational study, professional caregivers were observed during their daily work, supporting adults

with mild ID. Between October 2018 and March 2019, data were collected in nine community-based living

facilities where adults with all levels of ID were living and receiving support from professional caregivers.

Observations of professional caregivers providing regular daily support to adults with mild ID took place on three

random weekdays, on various moments of the day.

138541-Willems_BNW.indd 120 31-10-19 10:08

120

ABSTRACT

Background: Professional caregivers are important in the daily support of lifestyle change in adults with mild

intellectual disabilities (ID). However, little is known about which behaviour change techniques (BCTs) they

actually use in changing their lifestyle behaviour.

Aim: This study aims to get insight in the use of behaviour change techniques (BCTs) in daily support for lifestyle

behaviour of adults with mild ID, using video observations.

Methods: Professional caregivers (N=14) were observed in their daily work, supporting adults with mild ID. Videos

are analysed using the Coventry Aberdeen London Refined (CALO-RE) taxonomy and BCTs used were coded on a

data report form.

Results: 21 out of 40 BCTs were used by professional caregivers. The BCTs “Information about others' approval”,

“Identification as role model”, “Rewards on successful behaviour”, “Review behavioural goals” and “Instructions

on how to perform the behaviour” were mostly used.

Conclusion: Professional caregivers used BCTs to support lifestyle behaviour of adults with mild ID. However, the


121

1 | INTRODUCTION

Adults with intellectual disabilities (ID) often demonstrate an unhealthy lifestyle (McGuire, Daly, & Smyth, 2007).

They are often sedentary (Haveman et al., 2010), not physically active enough to gain substantial health benefits

(Draheim, Williams, & McCubbin, 2002; Frey & Chow, 2006; Lahtinen, Rintala, & Malin, 2007; Temple, Frey, &

Stanish, 2006), and they experience unhealthy dietary habits (Haveman et al., 2010; Hsieh, Rimmer, & Heller,

2014). Supporting lifestyle change for adults with intellectual disabilities is therefore important.

Lifestyle behaviour can be improved using behaviour change techniques (BCTs) in the general population (Bird

et al. 2013, Greaves et al., 2011; Michie, Abraham, Whittington, McAteer, & Gupta, 2009; Olander et al., 2013;

Williams & French, 2011). For adults with ID, we found frequent use of BCTs in lifestyle change interventions

although mostly implicit (Willems, Hilgenkamp, Havik, Waninge, & Melville, 2017).

According to professionals (professional caregivers, behavioural scientists, health professionals, intellectual

disability physicians) BCTs may be suitable to change lifestyle behaviour in adults with mild ID (Willems, Waninge,

De Jong, Hilgenkamp, & Van der Schans, 2019). Professional caregivers and relatives play an important role in

behaviour change for adults with ID (Alesi & Pepi, 2015; Davison, Jurkowski, Li, Kranz & Lawson, 2013; Grondhuis

& Aman, 2014; Heller, McCubbin, Drum, & Peterson, 2011; Hithersay, Strydom, Moulster, & Buszewicz, 2014;

James & Shireman, 2010; Melville, Hamilton, Hankey, Miller, & Boyle, 2007; Naaldenberg, Kuijken, van Dooren

& De Valk, 2013; Stanish, Temple & Frey, 2006; Van Schijndel-Speet, Evenhuis, Van Wijck, & Echteld, 2014). BCTs

that were considered most suitable were: “Barrier identification”, “Set graded tasks”, “Reward effort towards

behaviour”, “Motivational interviewing”, and “Action planning” (Willems et al., 2019). The perceived suitability

of BCTs was related to personal characteristics of adults with mild ID and the social support from others they

receive. However, to date, there is no insight into the actual use or application of BCTs in the daily support that

professional caregivers provide. This is instrumental knowledge for determining what BCT would be most

effective to focus on in a training or education program. In order to investigate the gaps of knowledge and

expertise, and to design meaningful support for professional caregivers, this observational study aims to observe

and determine the use of BCTs by professional caregivers, assisting lifestyle behaviour of adults with mild ID using

video observations. If BCTs are used by professional caregivers, this study will also investigate whether there is

any relation between the BCTs used and characteristics of the users.

2 | METHODS

2.1 | Design

During this observational study, professional caregivers were observed during their daily work, supporting adults

with mild ID. Between October 2018 and March 2019, data were collected in nine community-based living

facilities where adults with all levels of ID were living and receiving support from professional caregivers.

Observations of professional caregivers providing regular daily support to adults with mild ID took place on three

random weekdays, on various moments of the day.

138541-Willems_BNW.indd 121 31-10-19 10:08

122

2.2 | Participants

Participants were professional caregivers working with adults with mild ID in ID care provider organizations in

the Netherlands.

Inclusion criteria were:

- Professional caregivers;

- Supporting adults with mild ID (>18 years) in daily living;

- Working on community-based living facility for adults with ID of Dutch ID care provider organizations;

- Minimum of 6 months of working experience;

- Age ≥18 years.

Professional caregivers were approached through a consortium consisting of nine Dutch ID care provider

organizations. These organizations support persons within the whole range of ID. Participants were recruited by

contact persons of these organizations. Informed consent was asked for all participants (professional caregivers).

Since adults with mild ID may also be recorded, informed consent was also given by involved adults with mild ID

or their legal representatives.

2.3 | Ethical approval

Dispensation was obtained from the local medical ethical committee of the University Medical Centre Groningen

(number: 201700241, Medical Ethics Committee, University Medical Centre Groningen, the Netherlands, METc

UMCG) because this study did not concern medical scientific research in humans. Privacy of participants and

adults with mild ID was secured, saving the recordings and personal characteristics separately.

2.4 | Data collection

The observations were made in community-based living facilities. They were made on three weekdays on

different moments of the day, including an observation in the morning (e.g. during breakfast) and in the evening

(e.g. during diner or evening activities). Each video recording moment lasted for two hours to reveal a reliable

representation of the daily support of adults with mild ID. Professionals were asked to engage in their normal

activities like there was no observer. Activities regarding personal hygiene (e.g. showering, bathing) were not

recorded because of the privacy of the adults with mild ID.

The observations were of audio-visual nature, which means that the observations included both picture and

sound. The observations were non-participative, since the observer did not or only minimally participate in the

interaction between professional caregivers and the adults with mild ID they supported. The video recordings

were collected by interns working at the included living facility. The deployment of interns reduced the

infringement on the daily living of adults with mild ID, since the interns were already familiar. Interns were

instructed about the methods of the observations by the first author (MW). Instructions included 1) technical

instructions about how to use the camera 2) the observation method with information on how to film without

participating or interpreting 3) registration of the video recording, e.g. notation of characteristics to recognize

participants and adults with mild ID 4) bias registration, about possible forms of bias during filming and how to

123

register this when necessary 5) data storage instructions on how to store the video recordings safely after

recording. Observations were made with high quality cameras. Before starting the observations, interns had to

sign a declaration of confidentiality. The video camera was stored in a saved locker before, between and after

the observations until the camera was collected by the first author (MW).

The protocol for filming and instruction of the filming procedure were optimized using the first pilot type of

recordings. The latter were checked for correct placement of the camera, optimal visibility of the interaction

between professional caregiver and adults with mild ID and whether relevant information about the environment

and eventual special circumstances was provided by the interns making the video observations.

Before the video observations were made, professional caregivers were asked to complete a questionnaire about

demographic characteristics: age, gender, education level, working experience, current position, number of

colleagues, group size of the adults with mild ID and characteristics of the individuals with ID they were

supporting (age, gender, level of ID, mobility, additional problems). Before starting the observations, the first

author (MW) checked the questionnaires (about the general characteristics) for completeness.

After completion of the observations, the video camera with recordings was collected by the first author (MW).

The recordings were saved on two separate external hard disks, secured with different passwords. The passwords

were saved separately, in a file that was accessible by the researchers involved only. Afterwards, the memory

cards in the video cameras were formatted to erase all data. Names and characteristics of adults with mild ID

were extracted from the online questionnaire filled in by participants to determine which persons on the video’s

had given informed consent and to avoid that parts of the recordings were analysed where someone else was

accidentally filmed. Before data analyses, the first author (MW) checked the recordings for quality of the videos.

2.5 | Data analyses

The Coventry Aberdeen London Refined (CALO-RE) taxonomy (Michie et al., 2011) was used for deductive coding

of the BCTs. A data report form was designed and pilot tested by two authors (MW, AO), using the recordings

from the pilot test observations. No changes were made during pilot testing. The BCTs were coded per video

recording moment on use or non-use, frequency of use was not coded in a video recording moment.

Recordings were scored separately by two trained research assistants, which were instructed for scoring by the

first author (MW). After instruction, the two research assistants and the first author (MW) scored a sample of 2

recordings, including approximately 20 minutes of video material. The sample included recordings from different

observation moments and included a physical activity moment and a nutrition moment. Scorings were compared

and disagreements were solved by consensus discussion. Next, the researchers and first author (MW) scored

another sample of recordings of approximately 20 minutes of video material and interrater reliability was

calculated, disagreements were solved by consensus discussion. Interrater reliability after instruction for first

author and two research assistants (RA1 and RA2) was calculated. One research assistant (RA1) scored the videos

of twelve participants of the sample, whereas the other research assistant (RA2) scored the videos of two

participants. When scorings were halfway, research assistant (RA1) and first author (MW) scored a sample of

recordings (approximately 20 minutes of video material) to check interrater reliability again and solve

138541-Willems_BNW.indd 122 31-10-19 10:08

122

2.2 | Participants

Participants were professional caregivers working with adults with mild ID in ID care provider organizations in

the Netherlands.




- Working on community-based living facility for adults with ID of Dutch ID care provider organizations;

- Minimum of 6 months of working experience;

- Age ≥18 years.

Professional caregivers were approached through a consortium consisting of nine Dutch ID care provider

organizations. These organizations support persons within the whole range of ID. Participants were recruited by

contact persons of these organizations. Informed consent was asked for all participants (professional caregivers).

Since adults with mild ID may also be recorded, informed consent was also given by involved adults with mild ID

or their legal representatives.

2.3 | Ethical approval

Dispensation was obtained from the local medical ethical committee of the University Medical Centre Groningen

(number: 201700241, Medical Ethics Committee, University Medical Centre Groningen, the Netherlands, METc

UMCG) because this study did not concern medical scientific research in humans. Privacy of participants and

adults with mild ID was secured, saving the recordings and personal characteristics separately.

2.4 | Data collection

The observations were made in community-based living facilities. They were made on three weekdays on

different moments of the day, including an observation in the morning (e.g. during breakfast) and in the evening

(e.g. during diner or evening activities). Each video recording moment lasted for two hours to reveal a reliable

representation of the daily support of adults with mild ID. Professionals were asked to engage in their normal

activities like there was no observer. Activities regarding personal hygiene (e.g. showering, bathing) were not

recorded because of the privacy of the adults with mild ID.

The observations were of audio-visual nature, which means that the observations included both picture and

sound. The observations were non-participative, since the observer did not or only minimally participate in the

interaction between professional caregivers and the adults with mild ID they supported. The video recordings

were collected by interns working at the included living facility. The deployment of interns reduced the

infringement on the daily living of adults with mild ID, since the interns were already familiar. Interns were

instructed about the methods of the observations by the first author (MW). Instructions included 1) technical

instructions about how to use the camera 2) the observation method with information on how to film without

participating or interpreting 3) registration of the video recording, e.g. notation of characteristics to recognize

participants and adults with mild ID 4) bias registration, about possible forms of bias during filming and how to

123

register this when necessary 5) data storage instructions on how to store the video recordings safely after

recording. Observations were made with high quality cameras. Before starting the observations, interns had to

sign a declaration of confidentiality. The video camera was stored in a saved locker before, between and after

the observations until the camera was collected by the first author (MW).

The protocol for filming and instruction of the filming procedure were optimized using the first pilot type of

recordings. The latter were checked for correct placement of the camera, optimal visibility of the interaction

between professional caregiver and adults with mild ID and whether relevant information about the environment

and eventual special circumstances was provided by the interns making the video observations.

Before the video observations were made, professional caregivers were asked to complete a questionnaire about

demographic characteristics: age, gender, education level, working experience, current position, number of

colleagues, group size of the adults with mild ID and characteristics of the individuals with ID they were

supporting (age, gender, level of ID, mobility, additional problems). Before starting the observations, the first

author (MW) checked the questionnaires (about the general characteristics) for completeness.

After completion of the observations, the video camera with recordings was collected by the first author (MW).

The recordings were saved on two separate external hard disks, secured with different passwords. The passwords

were saved separately, in a file that was accessible by the researchers involved only. Afterwards, the memory

cards in the video cameras were formatted to erase all data. Names and characteristics of adults with mild ID

were extracted from the online questionnaire filled in by participants to determine which persons on the video’s

had given informed consent and to avoid that parts of the recordings were analysed where someone else was

accidentally filmed. Before data analyses, the first author (MW) checked the recordings for quality of the videos.

2.5 | Data analyses

The Coventry Aberdeen London Refined (CALO-RE) taxonomy (Michie et al., 2011) was used for deductive coding

of the BCTs. A data report form was designed and pilot tested by two authors (MW, AO), using the recordings

from the pilot test observations. No changes were made during pilot testing. The BCTs were coded per video

recording moment on use or non-use, frequency of use was not coded in a video recording moment.

Recordings were scored separately by two trained research assistants, which were instructed for scoring by the

first author (MW). After instruction, the two research assistants and the first author (MW) scored a sample of 2

recordings, including approximately 20 minutes of video material. The sample included recordings from different

observation moments and included a physical activity moment and a nutrition moment. Scorings were compared

and disagreements were solved by consensus discussion. Next, the researchers and first author (MW) scored

another sample of recordings of approximately 20 minutes of video material and interrater reliability was

calculated, disagreements were solved by consensus discussion. Interrater reliability after instruction for first

author and two research assistants (RA1 and RA2) was calculated. One research assistant (RA1) scored the videos

of twelve participants of the sample, whereas the other research assistant (RA2) scored the videos of two

participants. When scorings were halfway, research assistant (RA1) and first author (MW) scored a sample of

recordings (approximately 20 minutes of video material) to check interrater reliability again and solve

138541-Willems_BNW.indd 123 31-10-19 10:08

124

disagreements by consensus discussion. A sample of recording (approximately 20 minutes) was scored again for

calculating the intra-rater reliability.

For the characteristics of participants, means and standard deviations were calculated. The outcomes of the

frequency of usage of top 5 of BCTs used out of a total of 3 are binomial distributed. Therefore, a generalized

linear modelling analysis was performed using the logit link for binomial regression with the explanative variables

sex, age, work years, education, additional lifestyle training and policies.

3 | RESULTS


Fourteen professional caregivers participated in the study who supported adults with mild ID in a community

based living facility (N=6), and were filmed during daily support work. Participants had a mean age of 41.9 (SD

12.1) years and their mean working experience was 17.4 (SD 10.1, range 3-35) years. Baseline characteristics of

participants were shown in Table 1. Informed consent was given for 30 adults with mild ID, whereas 12 adults

where supported by 2 participants during the observations. Mean age of adults with mild ID was 51.5 years (SD

18.0). Participants (N=4) dropped out for several reasons: they left the organization during observation period

(n=1), ran out of time to perform the video observation (n=2) or the adults with ID involved did not have mild ID

(N=1). In total, 33:15:47 (h:m:s) film material was obtained and total observation time ranged from 00:13:10 to

04:38:59 per participant. Most participants (N=8) were filmed two moments (n=6) or one moment (n=2) or

instead of three moments, due to scheduling issues. For one participant, videos from two measurements had to

be erased as informed consent for an adult with mild ID was withdrawn. Interrater reliability after instruction

was 82.5% (MW-RA1), 85% (MW, RA2) and 87.5% (RA1-RA2) respectively. Interrater reliability halfway data

analysis for 2 measurements was 92.5% and 90% (MW-RA1). Intra-rater reliability was 97.5%, calculated as

percentage of absolute agreement.

Table 1: General characteristics of participants

Professional caregivers (N=14)

Age, mean (SD) 41.9 (12.1)

sex (% Female) 85.7

Working experience mean (SD) years 17.4

Mean years working in organization 15 (SD 7.5)

Mean working hours per week 18.6 (SD 7.2)

Education level Higher=6, Vocational=8

Supplemental lifestyle training No=9, Yes=5

Lifestyle policy in ID care organization Very little: 0, Little: 1, Not much/not little: 4, Much: 8, Very much: 1

Mean no. of clients per group 12.9 (SD 6.1)

Mean no. of professionals for clients 2.3 (SD 1.0)

125

3.2 | Behaviour change techniques in lifestyle support

A total of 21 BCTs was used by professional caregivers, supporting lifestyle behaviour of adults with mild ID. The

BCTs mostly used were: “Information about others' approval” (N=15), “Identification as role model” (N=15),

“Rewards on successful behaviour” (N=11), “Review behavioural goals” (N=9) and “Instructions on how to

perform the behaviour” (N=8). A total of nine BCTs was used by only two (N=1) or one (N=8) participants, and 19

BCTs were not used at all. See Table 2 for an overview of the frequencies for BCTs used.

Univariate binomial regression analysis were performed on frequency of use of the five mostly used BCTs

(“Information about others' approval”, “Identification as role model”, “Rewards on successful behaviour”,

“Review behavioural goals” and “Instructions on how to perform the behaviour”) one for each characteristic of

the 14 professional caregivers, including: sex, age, work years, education, additional lifestyle training and policies.

A significant effect was found for policies on the BCT “Identification as a role model” (odds ratio 0.04906, 95% CI

[0.00241, 0.2920]), whereas an increase in reported organization policies gives an increase in the BCT used. For

“Instructions on how to perform the behaviour”, an increase in reported policies gave a significant decrease as

well (odds ratio 0.2991; 95% CI [0.07762, 0.9102]). No significant effects were found for other participant

characteristics.

138541-Willems_BNW.indd 124 31-10-19 10:08

124

disagreements by consensus discussion. A sample of recording (approximately 20 minutes) was scored again for

calculating the intra-rater reliability.

For the characteristics of participants, means and standard deviations were calculated. The outcomes of the

frequency of usage of top 5 of BCTs used out of a total of 3 are binomial distributed. Therefore, a generalized

linear modelling analysis was performed using the logit link for binomial regression with the explanative variables

sex, age, work years, education, additional lifestyle training and policies.

3 | RESULTS


Fourteen professional caregivers participated in the study who supported adults with mild ID in a community

based living facility (N=6), and were filmed during daily support work. Participants had a mean age of 41.9 (SD

12.1) years and their mean working experience was 17.4 (SD 10.1, range 3-35) years. Baseline characteristics of

participants were shown in Table 1. Informed consent was given for 30 adults with mild ID, whereas 12 adults

where supported by 2 participants during the observations. Mean age of adults with mild ID was 51.5 years (SD

18.0). Participants (N=4) dropped out for several reasons: they left the organization during observation period

(n=1), ran out of time to perform the video observation (n=2) or the adults with ID involved did not have mild ID

(N=1). In total, 33:15:47 (h:m:s) film material was obtained and total observation time ranged from 00:13:10 to

04:38:59 per participant. Most participants (N=8) were filmed two moments (n=6) or one moment (n=2) or

instead of three moments, due to scheduling issues. For one participant, videos from two measurements had to

be erased as informed consent for an adult with mild ID was withdrawn. Interrater reliability after instruction

was 82.5% (MW-RA1), 85% (MW, RA2) and 87.5% (RA1-RA2) respectively. Interrater reliability halfway data

analysis for 2 measurements was 92.5% and 90% (MW-RA1). Intra-rater reliability was 97.5%, calculated as

percentage of absolute agreement.

Table 1: General characteristics of participants

Professional caregivers (N=14)

Age, mean (SD) 41.9 (12.1)

sex (% Female) 85.7

Working experience mean (SD) years 17.4

Mean years working in organization 15 (SD 7.5)

Mean working hours per week 18.6 (SD 7.2)

Education level Higher=6, Vocational=8

Supplemental lifestyle training No=9, Yes=5

Lifestyle policy in ID care organization Very little: 0, Little: 1, Not much/not little: 4, Much: 8, Very much: 1

Mean no. of clients per group 12.9 (SD 6.1)

Mean no. of professionals for clients 2.3 (SD 1.0)

125

3.2 | Behaviour change techniques in lifestyle support

A total of 21 BCTs was used by professional caregivers, supporting lifestyle behaviour of adults with mild ID. The

BCTs mostly used were: “Information about others' approval” (N=15), “Identification as role model” (N=15),

“Rewards on successful behaviour” (N=11), “Review behavioural goals” (N=9) and “Instructions on how to

perform the behaviour” (N=8). A total of nine BCTs was used by only two (N=1) or one (N=8) participants, and 19

BCTs were not used at all. See Table 2 for an overview of the frequencies for BCTs used.

Univariate binomial regression analysis were performed on frequency of use of the five mostly used BCTs

(“Information about others' approval”, “Identification as role model”, “Rewards on successful behaviour”,

“Review behavioural goals” and “Instructions on how to perform the behaviour”) one for each characteristic of

the 14 professional caregivers, including: sex, age, work years, education, additional lifestyle training and policies.

A significant effect was found for policies on the BCT “Identification as a role model” (odds ratio 0.04906, 95% CI

[0.00241, 0.2920]), whereas an increase in reported organization policies gives an increase in the BCT used. For

“Instructions on how to perform the behaviour”, an increase in reported policies gave a significant decrease as

well (odds ratio 0.2991; 95% CI [0.07762, 0.9102]). No significant effects were found for other participant

characteristics.

138541-Willems_BNW.indd 125 31-10-19 10:08

126

126

Tabl

e 2:

Fre

quen

cy ta

ble

of u

sed

BCTs

per

par

ticip

ant,

rank

ed b

y m

ost u

sed

BCTs

.

Part

icipa

nts

A

B C

E F

G I

K L

M

N O

P Q

Sum

of

us

ed

BCTs

BC

Ts

No.

of

mea

sure

men

ts

per

prof

essio

nal

care

give

r 3

3 1

2 2

3 2

1 2

3 3

2 2

2

#3 In

form

atio

n ab

out o

ther

s' ap

prov

al

1 1

1 0

1 1

1 1

2 3

2 0

1 0

15

#30

Iden

tifica

tion

as ro

le m

odel

0

1 1

2 0

1 0

1 1

3 3

1 1

0 15

#1

3 Re

war

ds o

n su

cces

sful

beh

avio

ur

0 0

1 2

0 1

0 1

2 0

1 0

2 1

11

#10

Revi

ew b

ehav

iour

al g

oals

0 0

1 1

0 1

2 1

1 2

0 0

0 0

9 #2

1 In

stru

ctio

ns o

n ho

w t

o pe

rfor

m t

he

beha

viou

r 0

2 0

1 0

1 0

0 1

3 0

0 0

0 8

#16

Self-

mon

itorin

g of

beh

avio

ur

0 1

1 0

0 0

2 1

0 0

0 1

1 0

7 #1

9 Fe

edba

ck o

n pe

rform

ance

0

2 1

0 0

1 0

0 0

3 0

0 0

0 7

#22

Mod

el/ d

emon

stra

te b

ehav

iour

0

0 0

1 0

2 0

0 1

1 0

0 1

1 7

#8 B

arrie

r ide

ntifi

catio

n 0

1 1

0 0

0 1

0 0

1 1

0 0

0 5

#12

Rew

ard

effo

rt to

war

ds b

ehav

iour

0

0 0

0 0

0 2

0 1

2 0

0 0

0 5

#20

Info

rmat

ion

whe

re a

nd w

hen

to p

erfo

rm

beha

viou

r 1

0 1

1 0

0 0

0 1

1 0

0 0

0 5

#7 A

ctio

n pl

anni

ng

0 0

0 0

0 0

1 0

0 1

0 1

0 0

3 #3

7 M

otiv

atio

nal i

nter

view

ing

0 0

0 0

0 0

0 0

0 0

3 0

0 0

3 #6

Goa

l set

ting

(out

com

e)

0 0

1 0

0 0

0 0

0 0

1 0

0 0

2 #1

Info

rmat

ion

on co

nseq

uenc

es in

gen

eral

0

0 0

1 0

0 0

0 0

0 0

0 0

0 1

#2 In

form

atio

n to

the

indi

vidu

al

0 0

1 0

0 0

0 0

0 0

0 0

0 0

1 #9

Gra

ded

task

s 0

0 0

0 0

0 1

0 0

0 0

0 0

0 1

#11

Revi

ew o

utco

me

goal

s 0

0 0

0 0

0 0

0 0

1 0

0 0

0 1

#28

Facil

itate

socia

l com

paris

on

0 0

0 0

0 0

1 0

0 0

0 0

0 0

1 #2

9 Pl

an so

cial s

uppo

rt/s

ocia

l cha

nge

0 0

0 0

0 0

1 0

0 0

0 0

0 0

1 #3

3 Se

lf-ta

lk

0 0

0 0

0 0

1 0

0 0

0 0

0 0

1 #4

Nor

mat

ive

info

rmat

ion

othe

rs' b

ehav

iour

0

0 0

0 0

0 0

0 0

0 0

0 0

0 0

127

#5 G

oal s

ettin

g (b

ehav

iour

) 0

0 0

0 0

0 0

0 0

0 0

0 0

0 0

#14

Shap

ing

0 0

0 0

0 0

0 0

0 0

0 0

0 0

0 #1

5 Ge

nera

lizat

ion

of b

ehav

iour

0

0 0

0 0

0 0

0 0

0 0

0 0

0 0

#17

Self-

mon

itorin

g of

out

com

e 0

0 0

0 0

0 0

0 0

0 0

0 0

0 0

#18

Focu

s on

past

succ

ess

0 0

0 0

0 0

0 0

0 0

0 0

0 0

0 #2

3 Te

ach

to u

se p

rom

pts/

cues

0

0 0

0 0

0 0

0 0

0 0

0 0

0 0

#24

Envi

ronm

enta

l res

truc

turin

g 0

0 0

0 0

0 0

0 0

0 0

0 0

0 0

#25

Beha

viou

ral c

ontr

act

0 0

0 0

0 0

0 0

0 0

0 0

0 0

0 #2

6 Pr

ompt

pra

ctice

0

0 0

0 0

0 0

0 0

0 0

0 0

0 0

#27

Use

of fo

llow

-up

prom

pts

0 0

0 0

0 0

0 0

0 0

0 0

0 0

0 #3

1 Pr

ompt

ant

icipa

ted

regr

et

0 0

0 0

0 0

0 0

0 0

0 0

0 0

0 #3

2 Fe

ar a

rous

al

0 0

0 0

0 0

0 0

0 0

0 0

0 0

0 #3

4 Us

e of

imag

ery

0 0

0 0

0 0

0 0

0 0

0 0

0 0

0 #3

5 Re

laps

e pr

even

tion/

copi

ng p

lann

ing

0 0

0 0

0 0

0 0

0 0

0 0

0 0

0 #3

6 St

ress

man

agem

ent /

emot

iona

l con

trol

tr

aini

ng

0 0

0 0

0 0

0 0

0 0

0 0

0 0

0

#38

Tim

e m

anag

emen

t 0

0 0

0 0

0 0

0 0

0 0

0 0

0 0

#39

Gene

ral c

omm

unica

tion

skill

s tra

inin

g 0

0 0

0 0

0 0

0 0

0 0

0 0

0 0

#40

Stim

ulat

e an

ticip

atio

n of

futu

re re

war

ds

0 0

0 0

0 0

0 0

0 0

0 0

0 0

0 No

. of (

uniq

uely

) use

d BC

Ts p

er p

rofe

ssio

nal

2 6

10

7 1

7 10

5

8 11

6

3 5

2 21

138541-Willems_BNW.indd 126 31-10-19 10:08

127

127

#5 G

oal s

ettin

g (b

ehav

iour

) 0

0 0

0 0

0 0

0 0

0 0

0 0

0 0

#14

Shap

ing

0 0

0 0

0 0

0 0

0 0

0 0

0 0

0 #1

5 Ge

nera

lizat

ion

of b

ehav

iour

0

0 0

0 0

0 0

0 0

0 0

0 0

0 0

#17

Self-

mon

itorin

g of

out

com

e 0

0 0

0 0

0 0

0 0

0 0

0 0

0 0

#18

Focu

s on

past

succ

ess

0 0

0 0

0 0

0 0

0 0

0 0

0 0

0 #2

3 Te

ach

to u

se p

rom

pts/

cues

0

0 0

0 0

0 0

0 0

0 0

0 0

0 0

#24

Envi

ronm

enta

l res

truc

turin

g 0

0 0

0 0

0 0

0 0

0 0

0 0

0 0

#25

Beha

viou

ral c

ontr

act

0 0

0 0

0 0

0 0

0 0

0 0

0 0

0 #2

6 Pr

ompt

pra

ctice

0

0 0

0 0

0 0

0 0

0 0

0 0

0 0

#27

Use

of fo

llow

-up

prom

pts

0 0

0 0

0 0

0 0

0 0

0 0

0 0

0 #3

1 Pr

ompt

ant

icipa

ted

regr

et

0 0

0 0

0 0

0 0

0 0

0 0

0 0

0 #3

2 Fe

ar a

rous

al

0 0

0 0

0 0

0 0

0 0

0 0

0 0

0 #3

4 Us

e of

imag

ery

0 0

0 0

0 0

0 0

0 0

0 0

0 0

0 #3

5 Re

laps

e pr

even

tion/

copi

ng p

lann

ing

0 0

0 0

0 0

0 0

0 0

0 0

0 0

0 #3

6 St

ress

man

agem

ent /

emot

iona

l con

trol

tr

aini

ng

0 0

0 0

0 0

0 0

0 0

0 0

0 0

0

#38

Tim

e m

anag

emen

t 0

0 0

0 0

0 0

0 0

0 0

0 0

0 0

#39

Gene

ral c

omm

unica

tion

skill

s tra

inin

g 0

0 0

0 0

0 0

0 0

0 0

0 0

0 0

#40

Stim

ulat

e an

ticip

atio

n of

futu

re re

war

ds

0 0

0 0

0 0

0 0

0 0

0 0

0 0

0 No

. of (

uniq

uely

) use

d BC

Ts p

er p

rofe

ssio

nal

2 6

10

7 1

7 10

5

8 11

6

3 5

2 21

138541-Willems_BNW.indd 127 31-10-19 10:08

128

4 | DISCUSSION

4.1 | Main findings

This observation study showed that professional caregivers used BCTs to support lifestyle behaviour of adults

with mild ID. The BCTs “Information about others' approval”, “Identification as role model”, “Rewards on

successful behaviour”, “Review behavioural goals” and “Instructions on how to perform the behaviour” were

mostly used. Only reported organization policies significantly decreased the frequency of use of “Identification

as a role model” and “Instructions on how to perform the behaviour”. No other significant effects were found

for characteristics of professional caregivers on the frequency of use of the five most frequently used BCTs.

The use of BCTs by professional caregivers is important and innovative knowledge, since it was unknown to which

extend professional caregivers used BCTs or whether they used any BCTs at all. However, the effectiveness of

the BCTs used was not researched in this study. Also, it is still unknown whether there is a relation between effect

of BCTs and the characteristics of adults with mild ID (e.g. qualities and disabilities). For example, adults with

mild ID have often issues regarding planning and executive functioning (American Psychiatric Association, 2013),

which implies that BCTs targeting planning like “Action planning”, “Barrier identification/problem solving” and

“Set graded tasks” may support them to change lifestyle behaviour. These BCTs were all used by professional

caregivers, but were not used mostly. Also, social and emotional development of adults with mild ID are

important to take into account (WHO, 1992) and may lead to use BCTs like “Provide information about others’

approval”, “Facilitate social comparison”, “General communication skills training” as well as “Prompt rewards

contingent on effort or progress towards behaviour” or “Provide rewards contingent on successful behaviour”.

Most of these BCTs were used by professional caregivers, with exception of “General communication skills

training”. The BCTs “Provide information about others' approval” and “Provide rewards contingent on successful

behaviour” were applied most frequently, which implicated that professional caregivers might take social and

emotional development of adults with mild ID into account. To further investigate the tailoring of used BCTs in

relation to the social and emotional characteristics of an adult with mild ID, future research could focus on the

effects of BCTs used to improve lifestyle behaviour change in adults with mild ID.

The BCTs “Information about others' approval”, “Rewards on successful behaviour”, “Review behavioural goals”,

“Instructions on how to perform the behaviour” and “Identification as role model” were often used by

professional caregivers. In our previous research, the first four BCTs were considered to be suitable BCTs in

changing lifestyle behaviour of adults with mild ID also (Willems et al., 2019). This means that professional

caregivers already use suitable BCTs, which is good news for clinical practice and professional caregivers.

However, the effects of using BCTs were not measured in this study so it is not clear if the BCTs used indeed

changed the lifestyle of adults with mild ID. The BCT “Identification as role model” was often used by professional

caregivers. However, this BCT was unsuitable according to a panel of behaviour scientists, but suitable according

to a panel of professional caregivers (Willems et al., 2019). This phenomenon is also known as the scientist-

practitioner split (Hoshmand & Polkinghorne, 1992). This finding is important because behavioural scientists are

trained to support professional caregivers about behaviour change, but professional caregivers still use a BCT

129

that is not suitable according to behavioural scientists. An explanation could be that behavioural scientists

interpret this BCT in another way than professional caregivers did. For example: behavioural scientists might

think that role modelling does not fit social and emotional development of adults with mild ID, whereas

professional caregivers did use the BCT in a way that the client is a role model for the professional caregiver on

that specific moment.

Some BCTs that were rarely used by professional caregivers, were considered suitable by health care

professionals. These BCTS were “Barrier identification/problem solving”, “Set graded tasks”, “Prompt rewards

contingent on effort or progress towards behaviour”, “Motivational interviewing” and “Action planning”. This

may imply that clinical practice might take advantage from BCTs that are still unknown by professional caregivers.

Training of professional caregivers in promising BCTs for changing lifestyle behaviour of adults with mild ID was

recommended.

4.2 | Strengths and limitations

Observations were performed using video cameras which increased reliability of the data. Video observation

made it possible to check and recheck the data and coding of the data. This method was independent of self-

report and opinions of participants, as is the case with questionnaires and other self-report methods. An eventual

drawback of video observation was external validity, since participants and adults with mild ID may have behaved

different because of the camera. Observations lasted for two hours, which gave participants the opportunity to

get used to the camera each measurement. However, observations took often less than the scheduled two hours,

which gave participants less time to get used and this might have influenced the study results since less time

could be analysed than was intended. However, this was the first-time clinical practice was observed with video

analysis to investigate the use of BCTs which gives guidance for future lifestyle behaviour change research.

Another strength of this study was the use of a structured taxonomy of BCTs, the CALO-RE taxonomy (Michie et

al., 2011). The systematic coding of BCTs was also used in literature about lifestyle change interventions for adults

with ID (Willems et al., 2017), but never in video observations. Since the taxonomy was not designed for adults

with mild ID, we used an adjusted version used before in a Delphi study about suitable BCTs for adults with mild

ID (Willems et al., 2019). This method gave insight in the use of BCTs in daily support of lifestyle change for adults

with mild ID. However, we did not research whether the use of BCTs was implicit or explicit. Also, the way in

which BCTs were used was not measured, for example whether healthy or even unhealthy behaviour was

supported. The BCTs were only coded as used or not-used instead of the frequency of use per observation

moment, which made differences between participants in time observed of less influence, also known as

selection bias.

Next to the BCTs used according to the CALO-RE taxonomy, we could not code all techniques used to change

behaviour. “Performing lifestyle behaviour together”, “Expressing confidence in one another” and “Checking on

lifestyle behaviour” were some techniques we could not code according to the existing taxonomy. A newer

taxonomy of BCTs, ‘Taxonomy v1’ (Michie et al., 2013), consisting of 93 BCTs was not used in this study because

138541-Willems_BNW.indd 128 31-10-19 10:08

128

4 | DISCUSSION

4.1 | Main findings

This observation study showed that professional caregivers used BCTs to support lifestyle behaviour of adults

with mild ID. The BCTs “Information about others' approval”, “Identification as role model”, “Rewards on

successful behaviour”, “Review behavioural goals” and “Instructions on how to perform the behaviour” were

mostly used. Only reported organization policies significantly decreased the frequency of use of “Identification

as a role model” and “Instructions on how to perform the behaviour”. No other significant effects were found

for characteristics of professional caregivers on the frequency of use of the five most frequently used BCTs.

The use of BCTs by professional caregivers is important and innovative knowledge, since it was unknown to which

extend professional caregivers used BCTs or whether they used any BCTs at all. However, the effectiveness of

the BCTs used was not researched in this study. Also, it is still unknown whether there is a relation between effect

of BCTs and the characteristics of adults with mild ID (e.g. qualities and disabilities). For example, adults with

mild ID have often issues regarding planning and executive functioning (American Psychiatric Association, 2013),

which implies that BCTs targeting planning like “Action planning”, “Barrier identification/problem solving” and

“Set graded tasks” may support them to change lifestyle behaviour. These BCTs were all used by professional

caregivers, but were not used mostly. Also, social and emotional development of adults with mild ID are

important to take into account (WHO, 1992) and may lead to use BCTs like “Provide information about others’

approval”, “Facilitate social comparison”, “General communication skills training” as well as “Prompt rewards

contingent on effort or progress towards behaviour” or “Provide rewards contingent on successful behaviour”.

Most of these BCTs were used by professional caregivers, with exception of “General communication skills

training”. The BCTs “Provide information about others' approval” and “Provide rewards contingent on successful

behaviour” were applied most frequently, which implicated that professional caregivers might take social and

emotional development of adults with mild ID into account. To further investigate the tailoring of used BCTs in

relation to the social and emotional characteristics of an adult with mild ID, future research could focus on the

effects of BCTs used to improve lifestyle behaviour change in adults with mild ID.

The BCTs “Information about others' approval”, “Rewards on successful behaviour”, “Review behavioural goals”,

“Instructions on how to perform the behaviour” and “Identification as role model” were often used by

professional caregivers. In our previous research, the first four BCTs were considered to be suitable BCTs in

changing lifestyle behaviour of adults with mild ID also (Willems et al., 2019). This means that professional

caregivers already use suitable BCTs, which is good news for clinical practice and professional caregivers.

However, the effects of using BCTs were not measured in this study so it is not clear if the BCTs used indeed

changed the lifestyle of adults with mild ID. The BCT “Identification as role model” was often used by professional

caregivers. However, this BCT was unsuitable according to a panel of behaviour scientists, but suitable according

to a panel of professional caregivers (Willems et al., 2019). This phenomenon is also known as the scientist-

practitioner split (Hoshmand & Polkinghorne, 1992). This finding is important because behavioural scientists are

trained to support professional caregivers about behaviour change, but professional caregivers still use a BCT

129

that is not suitable according to behavioural scientists. An explanation could be that behavioural scientists

interpret this BCT in another way than professional caregivers did. For example: behavioural scientists might

think that role modelling does not fit social and emotional development of adults with mild ID, whereas

professional caregivers did use the BCT in a way that the client is a role model for the professional caregiver on

that specific moment.

Some BCTs that were rarely used by professional caregivers, were considered suitable by health care

professionals. These BCTS were “Barrier identification/problem solving”, “Set graded tasks”, “Prompt rewards

contingent on effort or progress towards behaviour”, “Motivational interviewing” and “Action planning”. This

may imply that clinical practice might take advantage from BCTs that are still unknown by professional caregivers.

Training of professional caregivers in promising BCTs for changing lifestyle behaviour of adults with mild ID was

recommended.


Observations were performed using video cameras which increased reliability of the data. Video observation

made it possible to check and recheck the data and coding of the data. This method was independent of self-

report and opinions of participants, as is the case with questionnaires and other self-report methods. An eventual

drawback of video observation was external validity, since participants and adults with mild ID may have behaved

different because of the camera. Observations lasted for two hours, which gave participants the opportunity to

get used to the camera each measurement. However, observations took often less than the scheduled two hours,

which gave participants less time to get used and this might have influenced the study results since less time

could be analysed than was intended. However, this was the first-time clinical practice was observed with video

analysis to investigate the use of BCTs which gives guidance for future lifestyle behaviour change research.

Another strength of this study was the use of a structured taxonomy of BCTs, the CALO-RE taxonomy (Michie et

al., 2011). The systematic coding of BCTs was also used in literature about lifestyle change interventions for adults

with ID (Willems et al., 2017), but never in video observations. Since the taxonomy was not designed for adults

with mild ID, we used an adjusted version used before in a Delphi study about suitable BCTs for adults with mild

ID (Willems et al., 2019). This method gave insight in the use of BCTs in daily support of lifestyle change for adults

with mild ID. However, we did not research whether the use of BCTs was implicit or explicit. Also, the way in

which BCTs were used was not measured, for example whether healthy or even unhealthy behaviour was

supported. The BCTs were only coded as used or not-used instead of the frequency of use per observation

moment, which made differences between participants in time observed of less influence, also known as

selection bias.

Next to the BCTs used according to the CALO-RE taxonomy, we could not code all techniques used to change

behaviour. “Performing lifestyle behaviour together”, “Expressing confidence in one another” and “Checking on

lifestyle behaviour” were some techniques we could not code according to the existing taxonomy. A newer

taxonomy of BCTs, ‘Taxonomy v1’ (Michie et al., 2013), consisting of 93 BCTs was not used in this study because

138541-Willems_BNW.indd 129 31-10-19 10:08

130

of its extensiveness and thus low feasibility. The development of a practical, complete and tailored taxonomy

specific for changing lifestyle behaviour for adults with mild ID is recommended.


This observation study gives insight in BCTs used in lifestyle change for adults with mild ID by professional

caregivers. A logical next step in research would be to determine effective BCTs in changing lifestyle behaviour.

Research into the competencies of professional caregivers in changing lifestyle behaviour as well as training of

professional caregivers in suitable BCTs can give some further insights in changing lifestyle behaviour of adults

with mild ID.

4.4 | Conclusions

Professional caregivers used BCTs to change lifestyle behaviour of adults with mild ID. Most used BCTs were

“Information about others' approval”, “Identification as role model”, “Rewards on successful behaviour”,

“Review behavioural goals” and “Instructions on how to perform the behaviour”. Promising BCTs according to

previous research, were used only a few times. Clinical practice could benefit from the use of these suitable BCTs

to improve lifestyle behaviour of adults with mild ID.



131

REFERENCES

Alesi, M., & Pepi, A. (2015). Physical Activity Engagement in Young People with Down Syndrome:


American Psychiatric Association (2013). The diagnostic and statistical manual of mental disorders: DSM-5 (5th

Ed.). Washington, DC: Author.

Bird, E. L., Baker, G., Mutrie, N., Ogilvie, D., Sahlqvist, S., & Powell, J. (2013). Behaviour change techniques used

to promote walking and cycling: A systematic review. Health Psychology, 32(8), 829.

Davison, K. K., Jurkowski, J. M., Li, K., Kranz, S., & Lawson, H. A. (2013). A childhood obesity intervention

developed by families for families: results from a pilot study. International Journal of Behavioural


Draheim, C. C., Williams, D. P., & McCubbin, J. A. (2002). Prevalence of physical inactivity and recommended

physical activity in community-based adults with mental retardation. Mental Retardation, 40(6), 436-

444.

Frey, G. C., & Chow, B. (2006). Relationship between BMI, physical fitness, and motor skills in youth with mild

intellectual disabilities. International Journal of Obesity, 30(5), 861.



effectiveness in dietary and physical activity interventions. BMC Public Health, 11(1), 119.

Grondhuis, S. N., & Aman, M. G. (2014). Overweight and obesity in youth with developmental disabilities: a call

to action. Journal of Intellectual Disability Research, 58(9), 787-799.







Hithersay, R., Strydom, A., Moulster, G., & Buszewicz, M. (2014). Carer-led health interventions to

monitor, promote and improve the health of adults with intellectual disabilities in the community: A

systematic review. Research in Developmental Disabilities, 35(4), 887-907.

Hoshmand, L. T., & Polkinghorne, D. E. (1992). Redefining the science-practice relationship and professional

training. American Psychologist, 47(1), 55.

138541-Willems_BNW.indd 130 31-10-19 10:08

130

of its extensiveness and thus low feasibility. The development of a practical, complete and tailored taxonomy

specific for changing lifestyle behaviour for adults with mild ID is recommended.


This observation study gives insight in BCTs used in lifestyle change for adults with mild ID by professional

caregivers. A logical next step in research would be to determine effective BCTs in changing lifestyle behaviour.

Research into the competencies of professional caregivers in changing lifestyle behaviour as well as training of

professional caregivers in suitable BCTs can give some further insights in changing lifestyle behaviour of adults

with mild ID.

4.4 | Conclusions

Professional caregivers used BCTs to change lifestyle behaviour of adults with mild ID. Most used BCTs were

“Information about others' approval”, “Identification as role model”, “Rewards on successful behaviour”,

“Review behavioural goals” and “Instructions on how to perform the behaviour”. Promising BCTs according to

previous research, were used only a few times. Clinical practice could benefit from the use of these suitable BCTs

to improve lifestyle behaviour of adults with mild ID.



131

REFERENCES

Alesi, M., & Pepi, A. (2015). Physical Activity Engagement in Young People with Down Syndrome:




Bird, E. L., Baker, G., Mutrie, N., Ogilvie, D., Sahlqvist, S., & Powell, J. (2013). Behaviour change techniques used

to promote walking and cycling: A systematic review. Health Psychology, 32(8), 829.

Davison, K. K., Jurkowski, J. M., Li, K., Kranz, S., & Lawson, H. A. (2013). A childhood obesity intervention

developed by families for families: results from a pilot study. International Journal of Behavioural


Draheim, C. C., Williams, D. P., & McCubbin, J. A. (2002). Prevalence of physical inactivity and recommended

physical activity in community-based adults with mental retardation. Mental Retardation, 40(6), 436-

444.

Frey, G. C., & Chow, B. (2006). Relationship between BMI, physical fitness, and motor skills in youth with mild

intellectual disabilities. International Journal of Obesity, 30(5), 861.



effectiveness in dietary and physical activity interventions. BMC Public Health, 11(1), 119.

Grondhuis, S. N., & Aman, M. G. (2014). Overweight and obesity in youth with developmental disabilities: a call

to action. Journal of Intellectual Disability Research, 58(9), 787-799.







Hithersay, R., Strydom, A., Moulster, G., & Buszewicz, M. (2014). Carer-led health interventions to

monitor, promote and improve the health of adults with intellectual disabilities in the community: A

systematic review. Research in Developmental Disabilities, 35(4), 887-907.

Hoshmand, L. T., & Polkinghorne, D. E. (1992). Redefining the science-practice relationship and professional

training. American Psychologist, 47(1), 55.

138541-Willems_BNW.indd 131 31-10-19 10:08

132



James, A. S., & Shireman, T. I. (2010). Case Managers' and Independent Living Counselors' Perspectives on Health

Promotion Activities for Adults with Physical and Developmental Disabilities. Journal of Social Work in

Disability & Rehabilitation, 9(4), 274-288.

Lahtinen, U., Rintala, P., & Malin, A. (2007). Physical performance of adults with intellectual disability: A 30-year

follow-up. Adapted Physical Activity Quarterly, 24(2), 125-143.

McGuire, B. E., Daly, P., & Smyth, F. (2007). Lifestyle and health behaviours of adults with an intellectual disability.

Journal of Intellectual Disability Research, 51(7), 497-510.






taxonomy of behaviour change techniques to help people change their physical activity and

healthy eating behaviours: The CALO-RE taxonomy. Psychology & Health, 26(11), 1479-1498.

Michie, S., Richardson, M., Johnston, M., Abraham, C., Francis, J., Hardeman, W., Eccles, M. P., Cane, J. & Wood,

C. E. (2013). The behaviour change technique taxonomy (v1) of 93 hierarchically clustered techniques:

building an international consensus for the reporting of behaviour change interventions. Annals of

Behavioural Medicine, 46(1), 81-95.





effective techniques in changing obese adults’ physical activity self-efficacy and behaviour: a systematic

review and meta-analysis. International Journal of Behavioural Nutrition and Physical Activity, 10(29), 1-

15.

Stanish, H. I., Temple, V. A., & Frey, G. C. (2006). Health‐promoting physical activity of adults with mental

retardation. Mental Retardation and Developmental Disabilities Research Reviews, 12(1), 13-21.

Temple, V. A., Frey, G. C., & Stanish, H. I. (2006). Physical activity of adults with mental retardation: review and

research needs. American Journal of Health Promotion, 21(1), 2.

133








review. Research in Developmental Disabilities, 60, 256-268.

Willems, M., Waninge, A., De Jong, J., Hilgenkamp, T. I., & Van der Schans, C. P. (2019). Exploration of

suitable behaviour change techniques for lifestyle change of adults with mild ID: A Delphi study. Journal

of Applied Research in Intellectual Disabilities, 32(3), 543–557.



Research, 26(2), 308-322.

138541-Willems_BNW.indd 132 31-10-19 10:08

132



James, A. S., & Shireman, T. I. (2010). Case Managers' and Independent Living Counselors' Perspectives on Health

Promotion Activities for Adults with Physical and Developmental Disabilities. Journal of Social Work in

Disability & Rehabilitation, 9(4), 274-288.

Lahtinen, U., Rintala, P., & Malin, A. (2007). Physical performance of adults with intellectual disability: A 30-year

follow-up. Adapted Physical Activity Quarterly, 24(2), 125-143.

McGuire, B. E., Daly, P., & Smyth, F. (2007). Lifestyle and health behaviours of adults with an intellectual disability.

Journal of Intellectual Disability Research, 51(7), 497-510.






taxonomy of behaviour change techniques to help people change their physical activity and

healthy eating behaviours: The CALO-RE taxonomy. Psychology & Health, 26(11), 1479-1498.

Michie, S., Richardson, M., Johnston, M., Abraham, C., Francis, J., Hardeman, W., Eccles, M. P., Cane, J. & Wood,

C. E. (2013). The behaviour change technique taxonomy (v1) of 93 hierarchically clustered techniques:

building an international consensus for the reporting of behaviour change interventions. Annals of

Behavioural Medicine, 46(1), 81-95.





effective techniques in changing obese adults’ physical activity self-efficacy and behaviour: a systematic

review and meta-analysis. International Journal of Behavioural Nutrition and Physical Activity, 10(29), 1-

15.

Stanish, H. I., Temple, V. A., & Frey, G. C. (2006). Health‐promoting physical activity of adults with mental

retardation. Mental Retardation and Developmental Disabilities Research Reviews, 12(1), 13-21.

Temple, V. A., Frey, G. C., & Stanish, H. I. (2006). Physical activity of adults with mental retardation: review and

research needs. American Journal of Health Promotion, 21(1), 2.

133









Willems, M., Waninge, A., De Jong, J., Hilgenkamp, T. I., & Van der Schans, C. P. (2019). Exploration of

suitable behaviour change techniques for lifestyle change of adults with mild ID: A Delphi study. Journal

of Applied Research in Intellectual Disabilities, 32(3), 543–557.



Research, 26(2), 308-322.

138541-Willems_BNW.indd 133 31-10-19 10:08

Chapter 6

Training professional caregivers in changing lifestyle behaviour of adults


Mariël Willems

Cees. P. van der Schans

Johan de Jong

Wim P. Krijnen


Aly Waninge


138541-Willems_BNW.indd 134 31-10-19 10:08

Chapter 6

Training professional caregivers in changing lifestyle behaviour of adults


Mariël Willems

Cees. P. van der Schans

Johan de Jong

Wim P. Krijnen


Aly Waninge


138541-Willems_BNW.indd 135 31-10-19 10:08

136

ABSTRACT

Background: Adults with mild ID have low physical activity levels and high levels of overweight and obesity.

Professional caregivers play a significant role supporting these adults with decision making and planning of

healthy behaviour. However, promising BCTs are rarely used by professional caregivers. Training could be an

important step to support professional caregivers to use BCT’s in clinical practice.

Aim: This study aims to develop and pilot-test a theory-driven lifestyle training in the behaviour change technique

(BCT) “Action planning” for professional caregivers supporting adults with mild ID.

Methods: A training including two training sessions for professional caregivers was developed regarding the BCT

“Action planning”, using problem based learning (PBL) theory. The training design was evaluated, whereas

competence, readiness to use “Action planning” and barriers and facilitators to use the BCT were measured

before the start, between the training sessions and after completing the training, using questionnaires. Results

were analysed with descriptive statistics and multilevel analyses. Facilitators and barriers were categorized by

the COM-B model.

Results: Participants were satisfied about the two training sessions and the training in its entirety. Self-reported

competence, and readiness to use “Action planning” were increased significantly (p<0.05) after finishing the

training. Facilitators and barriers in the category ‘Opportunity’ were mentioned the most, compared to the

categories ‘Motivation’ and ‘Capacity’.

Conclusion: Training in the BCT “Action planning” may support professional caregivers in the use of BCT’s and

their readiness to plan lifestyle behaviour actions.

137

1 | INTRODUCTION

In general, adults with intellectual disabilities (ID) have low physical activity levels (Dairo, Collett, Dawes, &

Oskrochi, 2016; Hilgenkamp, Reis, van Wijck, & Evenhuis, 2012; Sundahl, Zetterberg, Wester, Rehn, & Blomqvist,

2016; Waninge et al., 2013) and demonstrate high levels of overweight and obesity (Hsieh, Rimmer, & Heller,

2013; Melville, Hamilton, Hankey, Miller, & Boyle, 2007; Robertson, Emerson, Baines, & Hatton, 2014).

Therefore, it is of utmost importance to support this group in moving towards a positive and healthy lifestyle.

So far, adapted lifestyle change interventions for adults with ID seem to lack evidence for effectiveness (Willems

et al., 2018). This effectiveness may be improved using behaviour change techniques (BCTs). In previous studies,

BCTs used were not explicitly recognized or labelled as such (Willems, Hilgenkamp, Havik, Waninge, & Melville,

2017), and combinations of different BCTs were used, which makes it difficult to study the effectiveness of the

use of individual BCTs (Willems et al., 2018).

Professional caregivers play a significant role supporting adults with mild ID with decision making and planning

of healthy behaviour (Ptomey et al., 2018; Spanos et al., 2013). Therefore, professional caregivers should be able

to use suitable BCTs in their practice. Although professional caregivers have significant training needs for

promoting a healthy lifestyle in adults with ID (Melville et al., 2009), health promotion programs do not promote

their knowledge and competences effectively and the evaluation of health promotion programs is crucial

(O’Connor-Fleming et al., 2006). In addition, improvement of training and support for caregivers to support adults

with ID more effectively has been recommended (Ptomey et al., 2018). Training of professional caregivers in

knowledge and skills about lifestyle behaviour of adults with mild ID could thus be useful to improve the lifestyle

of adults with mild ID.

According to earlier research, professional caregivers considered 24 BCTs to be suitable in supporting lifestyle

change for adults with mild ID (Willems, Waninge, De Jong, Hilgenkamp, & van der Schans, 2019a). The BCTs

considered most suitable were: “Barrier identification/problem solving”, “Set graded tasks”, “Reward effort

towards behaviour” and “Motivational interviewing and action planning” (Willems et al., 2019a). In addition, an

observational study showed that professional caregivers did use BCTs to change lifestyle behaviour of adults with

mild ID (Willems et al., 2019b). However, comparing the most suitable BCTs with the BCTs used in clinical practice,

professional caregivers did not often use BCTs that were considered as most suitable (Willems et al., 2019b).

These findings indicate that although using BCTs might be suitable in changing lifestyle for adults with mild ID,


One of the most potentially suitable BCTs is called “Action planning” and is defined as ‘detailed planning of what

the person will do including, as a minimum, when, in which situation and/or where to act’ (Michie et al., 2011).

Training in this BCT could be an important step to support professional caregivers in clinical practice. This study

aims to develop and pilot-test a theory-driven training in the BCT “Action planning” for professional caregivers

supporting adults with mild ID.

138541-Willems_BNW.indd 136 31-10-19 10:08

136

ABSTRACT

Background: Adults with mild ID have low physical activity levels and high levels of overweight and obesity.

Professional caregivers play a significant role supporting these adults with decision making and planning of

healthy behaviour. However, promising BCTs are rarely used by professional caregivers. Training could be an

important step to support professional caregivers to use BCT’s in clinical practice.

Aim: This study aims to develop and pilot-test a theory-driven lifestyle training in the behaviour change technique

(BCT) “Action planning” for professional caregivers supporting adults with mild ID.

Methods: A training including two training sessions for professional caregivers was developed regarding the BCT

“Action planning”, using problem based learning (PBL) theory. The training design was evaluated, whereas

competence, readiness to use “Action planning” and barriers and facilitators to use the BCT were measured

before the start, between the training sessions and after completing the training, using questionnaires. Results

were analysed with descriptive statistics and multilevel analyses. Facilitators and barriers were categorized by

the COM-B model.

Results: Participants were satisfied about the two training sessions and the training in its entirety. Self-reported

competence, and readiness to use “Action planning” were increased significantly (p<0.05) after finishing the

training. Facilitators and barriers in the category ‘Opportunity’ were mentioned the most, compared to the

categories ‘Motivation’ and ‘Capacity’.

Conclusion: Training in the BCT “Action planning” may support professional caregivers in the use of BCT’s and

their readiness to plan lifestyle behaviour actions.

137

1 | INTRODUCTION

In general, adults with intellectual disabilities (ID) have low physical activity levels (Dairo, Collett, Dawes, &

Oskrochi, 2016; Hilgenkamp, Reis, van Wijck, & Evenhuis, 2012; Sundahl, Zetterberg, Wester, Rehn, & Blomqvist,

2016; Waninge et al., 2013) and demonstrate high levels of overweight and obesity (Hsieh, Rimmer, & Heller,

2013; Melville, Hamilton, Hankey, Miller, & Boyle, 2007; Robertson, Emerson, Baines, & Hatton, 2014).

Therefore, it is of utmost importance to support this group in moving towards a positive and healthy lifestyle.

So far, adapted lifestyle change interventions for adults with ID seem to lack evidence for effectiveness (Willems

et al., 2018). This effectiveness may be improved using behaviour change techniques (BCTs). In previous studies,

BCTs used were not explicitly recognized or labelled as such (Willems, Hilgenkamp, Havik, Waninge, & Melville,

2017), and combinations of different BCTs were used, which makes it difficult to study the effectiveness of the

use of individual BCTs (Willems et al., 2018).

Professional caregivers play a significant role supporting adults with mild ID with decision making and planning

of healthy behaviour (Ptomey et al., 2018; Spanos et al., 2013). Therefore, professional caregivers should be able

to use suitable BCTs in their practice. Although professional caregivers have significant training needs for

promoting a healthy lifestyle in adults with ID (Melville et al., 2009), health promotion programs do not promote

their knowledge and competences effectively and the evaluation of health promotion programs is crucial

(O’Connor-Fleming et al., 2006). In addition, improvement of training and support for caregivers to support adults

with ID more effectively has been recommended (Ptomey et al., 2018). Training of professional caregivers in

knowledge and skills about lifestyle behaviour of adults with mild ID could thus be useful to improve the lifestyle


According to earlier research, professional caregivers considered 24 BCTs to be suitable in supporting lifestyle

change for adults with mild ID (Willems, Waninge, De Jong, Hilgenkamp, & van der Schans, 2019a). The BCTs

considered most suitable were: “Barrier identification/problem solving”, “Set graded tasks”, “Reward effort

towards behaviour” and “Motivational interviewing and action planning” (Willems et al., 2019a). In addition, an

observational study showed that professional caregivers did use BCTs to change lifestyle behaviour of adults with

mild ID (Willems et al., 2019b). However, comparing the most suitable BCTs with the BCTs used in clinical practice,

professional caregivers did not often use BCTs that were considered as most suitable (Willems et al., 2019b).

These findings indicate that although using BCTs might be suitable in changing lifestyle for adults with mild ID,


One of the most potentially suitable BCTs is called “Action planning” and is defined as ‘detailed planning of what

the person will do including, as a minimum, when, in which situation and/or where to act’ (Michie et al., 2011).

Training in this BCT could be an important step to support professional caregivers in clinical practice. This study

aims to develop and pilot-test a theory-driven training in the BCT “Action planning” for professional caregivers

supporting adults with mild ID.

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138

2 | METHODS

2.1 | Design

Based on previous research of suitable BCTs in adults with mild ID, a promising BCT called ‘“Action planning” was

selected to be the focus of a training for professional caregivers supporting adults with mild ID. A (multiple) case

study design was used. A training program was developed in cooperation with researchers and education

specialists working in the field of education for professional caregivers. The training program was reviewed by a

professional caregiver working with adults with mild ID.

To evaluate the training program, an online questionnaire was completed three times by participants: at baseline

(one month before the first training session), one month after the first training session and one month after the

second training session). In addition, participants were asked to evaluate 1) the training sessions and 2) training

components.

2.2 | Participants


Participants (N=11) were Dutch professional caregivers working in one team with adults with mild ID. The

professional caregivers were working as a team on one community-based living facility supporting adults with

mild ID.




- Minimum of 6 months of working experience in the field of supporting persons with mild ID;

- ≥18 years;

- Working in a community-based living facility for adults with mild ID;

- Interested in support in promoting a healthy lifestyle in adults with mild ID.

Exclusion criteria were:

- Professional caregivers leaving the organization during training period;

- Professional caregivers becoming long-term ill during training period;

- Students, working as interns.

Participants were approached through a consortium of Dutch ID care provider organisations. One of these

organisations invited professional caregivers of one residential care facility to participate in the training program.

Written informed consent was obtained from the participants.

139

2.3 | Development of the training

The training aimed to support professional caregivers in changing lifestyle behaviour of adults with mild ID. Since

professional caregivers did not often use the BCT “Action planning” in clinical practice, the training focussed on

increasing competences for using the BCT as well as participants’ readiness to use it. To give participants more

insight why they did or did not use the BCT, facilitators and barriers were also part of the training content.

2.3.1 | Theoretical basis

The training was developed using a learning theory, called problem based learning (PBL). Central in PBL is the

focus on specific and concrete problems and have a relationship to prior knowledge of the learner to start the

learning process. It has been applied to various disciplines of postsecondary education (Gijbels, Dochy, Van den

Bossche, & Segers, 2005). However, there is a wide variety in definitions of PBL (Chen, Cowdroy, Kingsland, &

Ostwald, 1995). According to Barrows (1996), there are six core principles:

1) Learning is student-centred;

2) Learning occurs in small student groups;

3) A tutor is present as a facilitator or guide;

4) Authentic problems are presented at the beginning of the learning sequence, before any

preparation or study has occurred;

5) The problems encountered are used as tools to achieve the required knowledge and the problem-

solving skills necessary to eventually solve the problems;

6) New information is acquired through self-directed learning (Gijbels et al., 2005).

Although there is debate about the effectiveness of PBL compared to traditional teaching strategies, PBL was

found to be effective to increase understanding of principles that link concepts to each other (Gijbels et al., 2005),

as well as for long-term retention, skill development and satisfaction (Strobel & van Barneveld, 2009).

2.3.2 | Content and delivery

The training consisted of two training sessions of 2.5 hours and was practically oriented: during the training

professional caregivers practiced their skills, and used knowledge by case discussion and role playing. The training

was offered in a group-wise manner, since PBL assumes that one is dependent from others to achieve new

knowledge using real-life cases. Thereby, co-creation was intended whereas colleagues collaborate to share their

explicit knowledge and reveal their implicit knowledge in a collective process to create knew knowledge (Ehlen,

Van der Klink, Stoffers, & Boshuizen, 2017). Social aspects such as trust and a positive team spirit were important

to stimulate knowledge development in a collective way (Ehlen et al., 2017). The role of the trainer was of

supportive nature, stimulating participants to use each other’s knowledge and skills and helping to deepen the

content of the brain storming and group discussions.

Using PBL, the first training session was designed to start with a brainstorm and a real-life case (problem

description). All participants had to prepare a case on forehand and these cases were merged into one case using

138541-Willems_BNW.indd 138 31-10-19 10:08

138

2 | METHODS

2.1 | Design

Based on previous research of suitable BCTs in adults with mild ID, a promising BCT called ‘“Action planning” was

selected to be the focus of a training for professional caregivers supporting adults with mild ID. A (multiple) case

study design was used. A training program was developed in cooperation with researchers and education

specialists working in the field of education for professional caregivers. The training program was reviewed by a

professional caregiver working with adults with mild ID.

To evaluate the training program, an online questionnaire was completed three times by participants: at baseline

(one month before the first training session), one month after the first training session and one month after the

second training session). In addition, participants were asked to evaluate 1) the training sessions and 2) training

components.

2.2 | Participants


Participants (N=11) were Dutch professional caregivers working in one team with adults with mild ID. The

professional caregivers were working as a team on one community-based living facility supporting adults with

mild ID.




- Minimum of 6 months of working experience in the field of supporting persons with mild ID;

- ≥18 years;

- Working in a community-based living facility for adults with mild ID;

- Interested in support in promoting a healthy lifestyle in adults with mild ID.

Exclusion criteria were:

- Professional caregivers leaving the organization during training period;

- Professional caregivers becoming long-term ill during training period;

- Students, working as interns.

Participants were approached through a consortium of Dutch ID care provider organisations. One of these

organisations invited professional caregivers of one residential care facility to participate in the training program.

Written informed consent was obtained from the participants.

139

2.3 | Development of the training

The training aimed to support professional caregivers in changing lifestyle behaviour of adults with mild ID. Since

professional caregivers did not often use the BCT “Action planning” in clinical practice, the training focussed on

increasing competences for using the BCT as well as participants’ readiness to use it. To give participants more

insight why they did or did not use the BCT, facilitators and barriers were also part of the training content.

2.3.1 | Theoretical basis

The training was developed using a learning theory, called problem based learning (PBL). Central in PBL is the

focus on specific and concrete problems and have a relationship to prior knowledge of the learner to start the

learning process. It has been applied to various disciplines of postsecondary education (Gijbels, Dochy, Van den

Bossche, & Segers, 2005). However, there is a wide variety in definitions of PBL (Chen, Cowdroy, Kingsland, &

Ostwald, 1995). According to Barrows (1996), there are six core principles:

1) Learning is student-centred;

2) Learning occurs in small student groups;

3) A tutor is present as a facilitator or guide;

4) Authentic problems are presented at the beginning of the learning sequence, before any

preparation or study has occurred;

5) The problems encountered are used as tools to achieve the required knowledge and the problem-

solving skills necessary to eventually solve the problems;

6) New information is acquired through self-directed learning (Gijbels et al., 2005).

Although there is debate about the effectiveness of PBL compared to traditional teaching strategies, PBL was

found to be effective to increase understanding of principles that link concepts to each other (Gijbels et al., 2005),

as well as for long-term retention, skill development and satisfaction (Strobel & van Barneveld, 2009).

2.3.2 | Content and delivery

The training consisted of two training sessions of 2.5 hours and was practically oriented: during the training

professional caregivers practiced their skills, and used knowledge by case discussion and role playing. The training

was offered in a group-wise manner, since PBL assumes that one is dependent from others to achieve new

knowledge using real-life cases. Thereby, co-creation was intended whereas colleagues collaborate to share their

explicit knowledge and reveal their implicit knowledge in a collective process to create knew knowledge (Ehlen,

Van der Klink, Stoffers, & Boshuizen, 2017). Social aspects such as trust and a positive team spirit were important

to stimulate knowledge development in a collective way (Ehlen et al., 2017). The role of the trainer was of

supportive nature, stimulating participants to use each other’s knowledge and skills and helping to deepen the

content of the brain storming and group discussions.

Using PBL, the first training session was designed to start with a brainstorm and a real-life case (problem

description). All participants had to prepare a case on forehand and these cases were merged into one case using

138541-Willems_BNW.indd 139 31-10-19 10:08

140

central themes from the participants’ cases. This central case was discussed during the training. Afterwards, a

minimal amount of theory about behaviour change in relation to adults with mild ID was provided, using video

images and brainstorming. According to PBL, self-directed learning was stimulated using role playing to acquire

knowledge and problem-solving skills necessary. The first training session was ended with reflection by

participants on their own learning process.

During the second training session, first an evaluation and reflection took place about the use of the BCT by

participants in the time between the two training sessions. Again, a form of role-playing was used to gain practical

skills, called the fish-bowl technique (Seaman, & Fellenz, 1989). Using this technique, two participants played

roles, two participants stood stand-by to take over a role when necessary and the other participants were

observers giving feedback afterwards. The fish-bowl role playing was used only during the second training

session.

2.3.3 | Review of the training program by professional caregiver

After developing the training program, the design of the training sessions was then discussed with a professional

caregiver working with adults with mild ID. The following topics were discussed:

1) Whether the training was appropriate for the interests, knowledge and learning strategies of the

intended participants;

2) If and in which way the training could be improved to support professional caregivers with the

intended behaviour;

3) Practical issues, such as time span and frequency of the training, potential breaks and location of

the training.

The most important adaptation based on this step in the design process was the integration of more examples

in the training, in particular in the theoretical part of the training. Also, the theory section was divided by breaks

to discuss what participants had learned, to increase opportunities to process the information. Last, observation

was added during the role playing in the first training session; two participants performed role playing and a third

participant observed the role playing.

2.4 | Training evaluation and outcome measures

The information from the baseline measures was used to tailor the training to the needs of the professional

caregivers and as baseline information. The second training session served as a follow-up training as well as an

evaluation moment. The follow-up consisted of repetition of knowledge and collecting knew knowledge of the

BCT as well as any questions from participants. During the evaluation, barriers and facilitators for the use of the

BCT were defined and solved where possible. When participants needed more training, a third training session

was offered.

To evaluate the training design, participants were asked to evaluate 1) the training sessions and 2) training

components:

141

1) Training sessions. Participants had to give the training sessions a report mark. These scores ranged from

1-10 with 1 as the lowest score and 10 as the highest score, using the same range of scores as school report

scores do in the Netherlands. After the second training, participants were also asked to score the training as a

total, using a score range from 1-10. In both questionnaires, participants were also asked whether the time of

training was in proportion with the gaining and the theory in proportion with practice during the training

sessions. Also, the frequency of training sessions as well as the duration of training sessions (score 0 too short,

score 5 too long) and time between training sessions was evaluated (score 0 too little time, score 5 too much

time). Participants could mention whether they would recommend the training to others (score 0 not

recommending the training, score 5 recommending the training).

2) Training components. During the training sessions, several training methods were used, including:

brainstorming, theory, video material, case discussion and roleplaying. These training components were

evaluated in the online questionnaire, whereas participants could score each component on a visual-analogic

scale (VAS), using scores from 0 (does not agree with the statement) to 5 (does agree with the statement).

Next to the evaluation of the training design, the following outcomes were measured:

1) Competence. Since there are a lot of different definitions of competence (Deardorff, 2006), the

definition used in Dutch clinical practice describing competences of professional caregivers of persons with ID

was utilized (Vereniging Gehandicaptenzorg Nederland, 2015), whereas competence included skills, knowledge,

and attitude towards supporting lifestyle behaviour. Competence of professional caregivers was measured

through self-report using (online) questionnaires. A feasible questionnaire was used to measure competence,

called the Attitude of Direct Support Persons- Health Enhancing Physical Activity (ASDP-HEPA) (Steenbergen et

al., 2019). This questionnaire included 6 questions to measure the attitude towards Health Enhancing Physical

Activity (HEPA). The questions were slightly adjusted to the use of the BCT “Action planning”, instead of physical

activity. Two questions were added to measure skills and knowledge towards “Action planning” specifically.

Participants reported on a visual-analogic scale (VAS) their self-experienced knowledge, attitude and skills. See

the Appendix for the questionnaire.

2) Readiness to use the BCT. The readiness of participants to use the BCT was measured using the five

stages of change from the transtheoretical model (Prochaska & Velicer, 1997), including pre-contemplation,

contemplation, preparation, action and maintenance. Participants answered if they already used the BCT for a

longer period (maintenance phase), for only a short period (action phase), or not used the BCT but willing to do

so in the near future (preparation phase) or later on (contemplation phase) or not willing to use the BCT (pre-

contemplation phase). The scores ranged from 0-4, whereas a score 0 meant that the participant did not use the

BCT “Action planning” at all and was not planning to use it in the future. A score 4 meant that the participant

already used the BCT for a longer period (over 6 months).

3) Barriers and facilitators to use the BCT. Participants were asked why they did or did not used the BCT

and what factors would support and withhold them to use the BCT for adults with mild ID. Barriers and facilitators

138541-Willems_BNW.indd 140 31-10-19 10:08

140

central themes from the participants’ cases. This central case was discussed during the training. Afterwards, a

minimal amount of theory about behaviour change in relation to adults with mild ID was provided, using video

images and brainstorming. According to PBL, self-directed learning was stimulated using role playing to acquire

knowledge and problem-solving skills necessary. The first training session was ended with reflection by

participants on their own learning process.

During the second training session, first an evaluation and reflection took place about the use of the BCT by

participants in the time between the two training sessions. Again, a form of role-playing was used to gain practical

skills, called the fish-bowl technique (Seaman, & Fellenz, 1989). Using this technique, two participants played

roles, two participants stood stand-by to take over a role when necessary and the other participants were

observers giving feedback afterwards. The fish-bowl role playing was used only during the second training

session.

2.3.3 | Review of the training program by professional caregiver

After developing the training program, the design of the training sessions was then discussed with a professional

caregiver working with adults with mild ID. The following topics were discussed:

1) Whether the training was appropriate for the interests, knowledge and learning strategies of the

intended participants;

2) If and in which way the training could be improved to support professional caregivers with the

intended behaviour;

3) Practical issues, such as time span and frequency of the training, potential breaks and location of

the training.

The most important adaptation based on this step in the design process was the integration of more examples

in the training, in particular in the theoretical part of the training. Also, the theory section was divided by breaks

to discuss what participants had learned, to increase opportunities to process the information. Last, observation

was added during the role playing in the first training session; two participants performed role playing and a third

participant observed the role playing.

2.4 | Training evaluation and outcome measures

The information from the baseline measures was used to tailor the training to the needs of the professional

caregivers and as baseline information. The second training session served as a follow-up training as well as an

evaluation moment. The follow-up consisted of repetition of knowledge and collecting knew knowledge of the

BCT as well as any questions from participants. During the evaluation, barriers and facilitators for the use of the

BCT were defined and solved where possible. When participants needed more training, a third training session

was offered.

To evaluate the training design, participants were asked to evaluate 1) the training sessions and 2) training

components:

141

1) Training sessions. Participants had to give the training sessions a report mark. These scores ranged from

1-10 with 1 as the lowest score and 10 as the highest score, using the same range of scores as school report

scores do in the Netherlands. After the second training, participants were also asked to score the training as a

total, using a score range from 1-10. In both questionnaires, participants were also asked whether the time of

training was in proportion with the gaining and the theory in proportion with practice during the training

sessions. Also, the frequency of training sessions as well as the duration of training sessions (score 0 too short,

score 5 too long) and time between training sessions was evaluated (score 0 too little time, score 5 too much

time). Participants could mention whether they would recommend the training to others (score 0 not

recommending the training, score 5 recommending the training).

2) Training components. During the training sessions, several training methods were used, including:

brainstorming, theory, video material, case discussion and roleplaying. These training components were

evaluated in the online questionnaire, whereas participants could score each component on a visual-analogic

scale (VAS), using scores from 0 (does not agree with the statement) to 5 (does agree with the statement).

Next to the evaluation of the training design, the following outcomes were measured:

1) Competence. Since there are a lot of different definitions of competence (Deardorff, 2006), the

definition used in Dutch clinical practice describing competences of professional caregivers of persons with ID

was utilized (Vereniging Gehandicaptenzorg Nederland, 2015), whereas competence included skills, knowledge,

and attitude towards supporting lifestyle behaviour. Competence of professional caregivers was measured

through self-report using (online) questionnaires. A feasible questionnaire was used to measure competence,

called the Attitude of Direct Support Persons- Health Enhancing Physical Activity (ASDP-HEPA) (Steenbergen et

al., 2019). This questionnaire included 6 questions to measure the attitude towards Health Enhancing Physical

Activity (HEPA). The questions were slightly adjusted to the use of the BCT “Action planning”, instead of physical

activity. Two questions were added to measure skills and knowledge towards “Action planning” specifically.

Participants reported on a visual-analogic scale (VAS) their self-experienced knowledge, attitude and skills. See

the Appendix for the questionnaire.

2) Readiness to use the BCT. The readiness of participants to use the BCT was measured using the five

stages of change from the transtheoretical model (Prochaska & Velicer, 1997), including pre-contemplation,

contemplation, preparation, action and maintenance. Participants answered if they already used the BCT for a

longer period (maintenance phase), for only a short period (action phase), or not used the BCT but willing to do

so in the near future (preparation phase) or later on (contemplation phase) or not willing to use the BCT (pre-

contemplation phase). The scores ranged from 0-4, whereas a score 0 meant that the participant did not use the

BCT “Action planning” at all and was not planning to use it in the future. A score 4 meant that the participant

already used the BCT for a longer period (over 6 months).

3) Barriers and facilitators to use the BCT. Participants were asked why they did or did not used the BCT

and what factors would support and withhold them to use the BCT for adults with mild ID. Barriers and facilitators

138541-Willems_BNW.indd 141 31-10-19 10:08

142

were measured by self-report. Using open ended questions, participants could mention factors that helped them

to use “Action planning” as well as factors that impedes the use of “Action planning”.

2.5 | Data analysis

To investigate whether the training had any effect on self-reported competence and readiness for BCT usage, a

mixed model analysis (Pinheiro, & Bates, 2000) was undertaken on the sum score of items for self-reported

competence, as well as on readiness for BCT usage. In the mixed model, a random intercept was specified for

each participant and fixed effects for the time effects. The latter corresponds with the differences in means

between time points. The statistical analyses were performed using the Statistical Package for Social Studies

(SPSS) version 22 for Windows with respect to descriptive statistics, and the statistical programming language R

version 3.4.0 (R Core Team, 2017) for the mixed models. Data of the training evaluation were described using

descriptive statistics.

Facilitators and barriers were analysed qualitatively in a deductive way, using the COM-B system (Michie, Van

Stralen, & West, 2011) by the first author (MW). This system is based on the Theoretical Domains Framework

(Cane, O’Connor, & Michie, 2012), and consists of the components Capability (C), Opportunity (O), and

Motivation (M), and Behaviour (B) (see Figure 1). Capability is defined as ‘the individual’s psychological and

physical capacity to engage in the activity concerned. It includes having the necessary knowledge and skills’.

Motivation is defined as ‘all those brain processes that energize and direct behaviour, not just goals and

conscious decision-making. It includes habitual processes, emotional responding, as well as analytical decision-

making’. Opportunity is defined as ‘all the factors that lie outside the individual that make the behaviour possible

or prompt it’ (Michie, Van Stralen, & West, 2011). These components together generate behaviour, and

behaviour influences the three components of the system as well. The sum of all facilitators and barriers was

counted, as well as the sum of all unique answers, using the central theme(s) of each mentioned facilitator and

barrier, whereas comparable answers were counted as one. Coding was checked for agreement by the last author

(AW) and disagreement was solved by consensus discussion.

143

Figure 1 Overview of the relation between the Theoretical Domains Framework and the COM-B system (Bossink, Van der

Putten, & Vlaskamp, 2019).

3. | RESULTS

3.1 | General results

A total of 11 participants was included in the study. Their mean (SD) age was 37 (7.5) years and 73% was female.

All participants (N=11) joined the first training session, two participants did not attend the second training

session, due to illness and holidays. All participants (N=11) completed all three questionnaires.

3.2 | Evaluation of the training

The training had a mean (SD) score of 7.4 (0.5), one participant did not score the training. Participants evaluated

the first training session with a mean (SD) score of 7.7 (0.5). For the scores on the second training session, data

were missing for two participants since they missed the second training session. The second training session was

given a mean (SD) score of 7.4 (0.5). See also Table 1 for evaluation scores of the training sessions.

Table 1 Mean (SD) scores for evaluation of the training sessions

Training session 1 Training session 2 Total training

Theory-practice ratio 3.7 (0.6) 3.4 (0.9) 3.5 (0.5)

Time investment-gaining ratio 3.7 (0.9) 3.6 (0.9) 3.5 (0.8)

Report score 7.7 (0.5) 7.4 (0.5) 7.5 (0.5)

138541-Willems_BNW.indd 142 31-10-19 10:08

142

were measured by self-report. Using open ended questions, participants could mention factors that helped them

to use “Action planning” as well as factors that impedes the use of “Action planning”.

2.5 | Data analysis

To investigate whether the training had any effect on self-reported competence and readiness for BCT usage, a

mixed model analysis (Pinheiro, & Bates, 2000) was undertaken on the sum score of items for self-reported

competence, as well as on readiness for BCT usage. In the mixed model, a random intercept was specified for

each participant and fixed effects for the time effects. The latter corresponds with the differences in means

between time points. The statistical analyses were performed using the Statistical Package for Social Studies

(SPSS) version 22 for Windows with respect to descriptive statistics, and the statistical programming language R

version 3.4.0 (R Core Team, 2017) for the mixed models. Data of the training evaluation were described using

descriptive statistics.

Facilitators and barriers were analysed qualitatively in a deductive way, using the COM-B system (Michie, Van

Stralen, & West, 2011) by the first author (MW). This system is based on the Theoretical Domains Framework

(Cane, O’Connor, & Michie, 2012), and consists of the components Capability (C), Opportunity (O), and

Motivation (M), and Behaviour (B) (see Figure 1). Capability is defined as ‘the individual’s psychological and

physical capacity to engage in the activity concerned. It includes having the necessary knowledge and skills’.

Motivation is defined as ‘all those brain processes that energize and direct behaviour, not just goals and

conscious decision-making. It includes habitual processes, emotional responding, as well as analytical decision-

making’. Opportunity is defined as ‘all the factors that lie outside the individual that make the behaviour possible

or prompt it’ (Michie, Van Stralen, & West, 2011). These components together generate behaviour, and

behaviour influences the three components of the system as well. The sum of all facilitators and barriers was

counted, as well as the sum of all unique answers, using the central theme(s) of each mentioned facilitator and

barrier, whereas comparable answers were counted as one. Coding was checked for agreement by the last author

(AW) and disagreement was solved by consensus discussion.

143

Figure 1 Overview of the relation between the Theoretical Domains Framework and the COM-B system (Bossink, Van der

Putten, & Vlaskamp, 2019).

3. | RESULTS

3.1 | General results

A total of 11 participants was included in the study. Their mean (SD) age was 37 (7.5) years and 73% was female.

All participants (N=11) joined the first training session, two participants did not attend the second training

session, due to illness and holidays. All participants (N=11) completed all three questionnaires.

3.2 | Evaluation of the training

The training had a mean (SD) score of 7.4 (0.5), one participant did not score the training. Participants evaluated

the first training session with a mean (SD) score of 7.7 (0.5). For the scores on the second training session, data

were missing for two participants since they missed the second training session. The second training session was

given a mean (SD) score of 7.4 (0.5). See also Table 1 for evaluation scores of the training sessions.

Table 1 Mean (SD) scores for evaluation of the training sessions

Training session 1 Training session 2 Total training

Theory-practice ratio 3.7 (0.6) 3.4 (0.9) 3.5 (0.5)

Time investment-gaining ratio 3.7 (0.9) 3.6 (0.9) 3.5 (0.8)

Report score 7.7 (0.5) 7.4 (0.5) 7.5 (0.5)

138541-Willems_BNW.indd 143 31-10-19 10:08

144

Table 2 gives an overview of the evaluation of the total training. The higher the mean score, the more satisfied

the participants were about the evaluation subject. There were no missing data. Recommendation of the training

had the highest mean (SD) score of 3.4 (0.9) and the number of training sessions had the lowest mean (SD) score

of 2.4 (0.9).

Table 2 Mean scores (SD) for evaluation of the training

Scores for the total training

(range 0 (does not agree) to 5 (does agree)

Would recommend the training to others 3.4 (0.9)

Agrees with number of training sessions 2.4 (0.9)

Agrees with duration of training sessions 2.5 (0.9)

Agrees with time between training sessions 2.7 (0.6)

After training 1 (T1) and after training 2 (T2) the individual training components were scored by participants (n=2

missing data for T2). For the first training session, the Brainstorm (Mean 3.7, SD 0.8) and Case discussion (Mean

3.7, SD 0.9) scored the highest mean score. For the second training session, the Brainstorm (Mean 3.9, SD 0.6)

and Case discussion (Mean 3.9, SD 0.6) as well as the Fish-bowl role playing (Mean 3.9, SD 0.8) scored the highest

mean score. See Table 3 for an overview of scores on the training session components.

Table 3 Mean scores (SD) of the evaluation of training session components (range 0 (not good) – 5 (very good))

Training session 1 Training session 2

Brainstorming 3.7 (0.8) 3.9 (0.6)

Theory 3.5 (0.8) 3.2 (0.7)

Video material 3.6 (0.9) 3.2 (1.7)

Case discussion 3.7 (0.9) 3.9 (0.6)

Role playing 3.4 (1.2) -

Role playing: fish-bowl technique - 3.9 (0.8)

3.3 | Competence to use the BCT “Action Planning”

Total self-reported competence to use the BCT “Action Planning” increased significantly after finishing the

training (T2), t(20)=3.794, p<0.01, Estimated effect 4.2727, SE 1.1262. No significant effect was found when

comparing the total score before the first training session (T0) with the total score after the first training (T1),

t(20)=0.726, p>0.05, Estimate 0.8182, SE 1.1262, see also Table 4.

Table 4 Mean (SD) scores for self-reported competence and readiness to use “Action planning”

Item T0 T1 T2

Total score of self-reported competence 26.7 (4.8) 27.5 (5.1) 31.0 (4.0)*

Readiness to use “Action planning” 2.5 (1.2) 3.7 (0.5)* 3.7 (0.5)*

*significant increase compared to mean score at T0, p<0.05

145

3.4 | Readiness to use the BCT “Action planning”

Self-reported readiness to use the BCT “Action planning” increased significantly after finishing the training (T2),

t(20)=3.968 p<0.01, Estimate 1.1818, SE 0.2978. A significant increase was also found after the first training

session (T1), t(20)=3.968 p<0.01, Estimate 1.1818, SE 0.2978, see also Table 4.

3.5 | Facilitators

Facilitators regarding all factors from the COM-B system were mentioned by participants, whereas ‘opportunity

facilitators’ were referred to mostly. Examples of opportunity facilitators were ‘clear and joint agreements’ and

‘time and resources’. ‘Practical tips and tricks’ was an example of a capability facilitator. A motivational facilitator

was about reinforcement of using the BCT “Action planning” for the participant and the adults with mild ID.

Besides the COM-B categories, a category client characteristics was also used to categorize facilitators as well,

for example ‘the attitude of the adults with mild ID about a healthy lifestyle and planning in daily living’. See

Table 5 for an overview of categorized facilitators. For each category of facilitators some answers were

comparable, resulting in differences between the total sum of facilitators and the sum of unique facilitators.

3.6 | Barriers

Barriers from all three COM-B categories were mentioned, opportunity barriers (n=17) were mentioned mostly,

and capability barriers (n=4) were mentioned less. Examples of opportunity barriers were: ‘a lack of consensus

among team members towards “Action planning” and a healthy lifestyle’ and ‘a lack of time’. Examples of

motivational barriers (n=8) were: ‘beliefs about their own professional role’ and ‘believes about their own

responsibility’. An example of a capability barrier was ‘a lack of knowledge and skills to plan action’. Client

characteristics were mentioned in addition to barriers from the categories of the COM-B system, for example

‘the intrinsic motivation of the adults with mild ID’. For each category of barriers some answers were comparable,

resulting in differences between the total sum of barriers and the sum of unique barriers.

Table 5 Facilitators and barriers about usage of the BCT “Action planning” categorized using the COM-B system

* Client characteristics are not a part of the original COM-B system but are added to enable coding of all data.

4. | DISCUSSION

This study showed a significant increase in readiness to use “Action Planning” by professional caregivers after

the lifestyle training provided. Professional caregivers also experienced significantly more competence towards

the usage of “Action planning”. Facilitators and barriers from all three categories of the COM-B model (capability,

Total sum of facilitators Sum of unique facilitators Total sum of barriers Sum of

unique barriers

Capability 8 4 4 2 Opportunity 17 4 17 4 Motivation 2 2 7 2 Client characteristics* 1 1 9 3

138541-Willems_BNW.indd 144 31-10-19 10:08

144

Table 2 gives an overview of the evaluation of the total training. The higher the mean score, the more satisfied

the participants were about the evaluation subject. There were no missing data. Recommendation of the training

had the highest mean (SD) score of 3.4 (0.9) and the number of training sessions had the lowest mean (SD) score

of 2.4 (0.9).

Table 2 Mean scores (SD) for evaluation of the training

Scores for the total training

(range 0 (does not agree) to 5 (does agree)

Would recommend the training to others 3.4 (0.9)

Agrees with number of training sessions 2.4 (0.9)

Agrees with duration of training sessions 2.5 (0.9)

Agrees with time between training sessions 2.7 (0.6)

After training 1 (T1) and after training 2 (T2) the individual training components were scored by participants (n=2

missing data for T2). For the first training session, the Brainstorm (Mean 3.7, SD 0.8) and Case discussion (Mean

3.7, SD 0.9) scored the highest mean score. For the second training session, the Brainstorm (Mean 3.9, SD 0.6)

and Case discussion (Mean 3.9, SD 0.6) as well as the Fish-bowl role playing (Mean 3.9, SD 0.8) scored the highest

mean score. See Table 3 for an overview of scores on the training session components.

Table 3 Mean scores (SD) of the evaluation of training session components (range 0 (not good) – 5 (very good))

Training session 1 Training session 2

Brainstorming 3.7 (0.8) 3.9 (0.6)

Theory 3.5 (0.8) 3.2 (0.7)

Video material 3.6 (0.9) 3.2 (1.7)

Case discussion 3.7 (0.9) 3.9 (0.6)

Role playing 3.4 (1.2) -

Role playing: fish-bowl technique - 3.9 (0.8)

3.3 | Competence to use the BCT “Action Planning”

Total self-reported competence to use the BCT “Action Planning” increased significantly after finishing the

training (T2), t(20)=3.794, p<0.01, Estimated effect 4.2727, SE 1.1262. No significant effect was found when

comparing the total score before the first training session (T0) with the total score after the first training (T1),

t(20)=0.726, p>0.05, Estimate 0.8182, SE 1.1262, see also Table 4.

Table 4 Mean (SD) scores for self-reported competence and readiness to use “Action planning”

Item T0 T1 T2

Total score of self-reported competence 26.7 (4.8) 27.5 (5.1) 31.0 (4.0)*

Readiness to use “Action planning” 2.5 (1.2) 3.7 (0.5)* 3.7 (0.5)*

*significant increase compared to mean score at T0, p<0.05

145

3.4 | Readiness to use the BCT “Action planning”

Self-reported readiness to use the BCT “Action planning” increased significantly after finishing the training (T2),

t(20)=3.968 p<0.01, Estimate 1.1818, SE 0.2978. A significant increase was also found after the first training

session (T1), t(20)=3.968 p<0.01, Estimate 1.1818, SE 0.2978, see also Table 4.

3.5 | Facilitators

Facilitators regarding all factors from the COM-B system were mentioned by participants, whereas ‘opportunity

facilitators’ were referred to mostly. Examples of opportunity facilitators were ‘clear and joint agreements’ and

‘time and resources’. ‘Practical tips and tricks’ was an example of a capability facilitator. A motivational facilitator

was about reinforcement of using the BCT “Action planning” for the participant and the adults with mild ID.

Besides the COM-B categories, a category client characteristics was also used to categorize facilitators as well,

for example ‘the attitude of the adults with mild ID about a healthy lifestyle and planning in daily living’. See

Table 5 for an overview of categorized facilitators. For each category of facilitators some answers were

comparable, resulting in differences between the total sum of facilitators and the sum of unique facilitators.

3.6 | Barriers

Barriers from all three COM-B categories were mentioned, opportunity barriers (n=17) were mentioned mostly,

and capability barriers (n=4) were mentioned less. Examples of opportunity barriers were: ‘a lack of consensus

among team members towards “Action planning” and a healthy lifestyle’ and ‘a lack of time’. Examples of

motivational barriers (n=8) were: ‘beliefs about their own professional role’ and ‘believes about their own

responsibility’. An example of a capability barrier was ‘a lack of knowledge and skills to plan action’. Client

characteristics were mentioned in addition to barriers from the categories of the COM-B system, for example

‘the intrinsic motivation of the adults with mild ID’. For each category of barriers some answers were comparable,

resulting in differences between the total sum of barriers and the sum of unique barriers.

Table 5 Facilitators and barriers about usage of the BCT “Action planning” categorized using the COM-B system

* Client characteristics are not a part of the original COM-B system but are added to enable coding of all data.

4. | DISCUSSION

This study showed a significant increase in readiness to use “Action Planning” by professional caregivers after

the lifestyle training provided. Professional caregivers also experienced significantly more competence towards

the usage of “Action planning”. Facilitators and barriers from all three categories of the COM-B model (capability,

Total sum of facilitators Sum of unique facilitators Total sum of barriers Sum of

unique barriers

Capability 8 4 4 2 Opportunity 17 4 17 4 Motivation 2 2 7 2 Client characteristics* 1 1 9 3

138541-Willems_BNW.indd 145 31-10-19 10:08

146

opportunity, and motivation) were mentioned. Opportunity facilitators (e.g. approach shared by the entire team)

and opportunity barriers (e.g. not enough time) were mentioned the most. Participants were satisfied about the

two training sessions and the training in its entirety.

4.1 | Discussion of main findings

This study was, as far as we know, the first one whereby the use of a single BCT was trained and evaluated. This

is an innovative way of training since previous studies did not recognize and labelled BCTs used explicitly and

often lacked a theoretical base for the intervention researched (Willems et al., 2017). It is therefore important

for changing lifestyle behaviour to set small steps towards healthier lifestyle behaviour which can be measured

and evaluated in an unambiguous way. For future research, this training concept could be used also to train

professional caregivers in other promising BCTs to improve lifestyle behaviour of adults with mild ID.

Since “Action planning” was a promising BCT (Willems et al., 2019) but not used much in clinical practice (Willems

et al., 2019b), we chose this BCT as a focus of supporting professional caregivers. However, the use of a single

BCT needs to be reviewed in relation to other BCTs. For example: “Action planning” could be related to the BCT

“goal setting (of behaviour)”, since one has to know which action has to be planned before it can be planned. So

in clinical practice, a single BCT might not always be used separately. For future training of professional

caregivers, this is useful to keep in mind. Thereby, future research could examine which BCTs are (inter)related

to each other, in which ways, and how they can be combined in clinical practice to support lifestyle behaviour of

adults with mild ID.

After finishing the training, professional caregivers felt more competent to plan lifestyle behaviour actions with

the adults with mild ID they supported. This is a promising finding, since competence is an important prerequisite

for performance (Rethans et al., 2002) which implicate that the training studied could influence the usage of the

BCT “Action planning”. This was supported by the significant increase of readiness to use the BCT, as reported by

professional caregivers. Since “Action planning” was rarely used by professional caregivers (Willems et al., 2019b)

but was found to be a promising BCT for changing lifestyle in adults with mild ID (Willems et al., 2019a), this

training could contribute to increased use of this BCT and thus to improved lifestyle behaviour of adults with mild

ID. As this study did not investigate the training effects on the actual use of “Action planning” by professional

caregiver, this is a recommendation for future research.

Professional caregivers described facilitators and barriers from all three categories of the COM-B system

(capability, opportunity and motivation). This is in line with a previous study about physical activity support for

adults with ID (Bossink, Van der Putten, & Vlaskamp, 2019). Most facilitators and barriers could be classified

under opportunity. This might implicate that the usage of the BCT can be increased mostly by enabling

opportunities for professional caregivers to plan lifestyle behaviour actions, such as more time and resources to

plan lifestyle behaviour actions and clear and joint agreements in a team of professional caregivers. A category

called client characteristics was added to the original COM-B system, since professional caregivers mentioned

facilitators and barriers that could not be categorized und the COM-B categories and related to specific

characteristics of the individuals with ID. This new category was used earlier (Bossink et al., 2019) but included

147

mostly barriers. It can be discussed whether resistance and motivation of adults with mild ID was a client

characteristic or that it was also the role of a professional caregiver to influence the motivation of an adult with

ID towards healthy lifestyle behaviour. It might be a combination of client responsibility towards their own

behaviour as well as the role of a professional caregiver to support a client towards healthy lifestyle behaviour.


A major strength of this study was that a theory-driven BCT was used to train professional caregivers supporting

lifestyle behaviour of adults with mild ID. This is the first study using a design of training a single BCT for

supporting of professional caregivers. The training format was also based on theory, using the problem-based

learning strategy (PBL), as well as the deductive analysis of the facilitators and barriers influencing the usage of

“Action planning” using the COM-B model. A consideration of this study could be that the training was only

offered to one team of professional caregivers. This might have influenced the results since these participants

have the same working environment and therefore probably experience the same challenges regarding the use

of “Action planning” and might have shared opinions about “Action planning”. Another team of professional

caregivers might experience other challenges and opinions which might have led to other results about

facilitators and barriers towards “Action planning”, as well as towards their readiness to use “Action planning”.

However, since this is a pilot-test of the training, the findings of this study are promising, and can be guiding for

future research in showing the usefulness of a single BCT training for professional caregivers.


To our knowledge, this is the first study investigating the effects of a training of a single BCT for professional

caregivers supporting lifestyle behaviour of adults with mild ID. A significant increase in self-experienced

competence and readiness to use the BCT was found after participating in a training in “Action planning”.

Facilitators and barriers mostly fell in the category ‘opportunity’. Since professional caregivers were trainable

and they experienced training needs regarding lifestyle behaviour support of adults with mild ID, research of

training in other suitable, single BCTs is recommended. Since the effects of the training on the use of the BCT and

the lifestyle behaviour of adults with mild ID were not researched in this study, further research is necessary to

determine whether training affects the use of “Action planning” and whether the lifestyle behaviour of adults

becomes healthier.

4.4 | Conclusion

This study researched a training in the BCT “Action planning” supporting professional caregivers, in the use of

BCT’s and their readiness to plan lifestyle behaviour actions of adults with mild ID. Training in the BCT “Action

planning” may support professional caregivers in the use of BCT’s and their readiness to plan lifestyle behaviour

actions.



138541-Willems_BNW.indd 146 31-10-19 10:08

146

opportunity, and motivation) were mentioned. Opportunity facilitators (e.g. approach shared by the entire team)

and opportunity barriers (e.g. not enough time) were mentioned the most. Participants were satisfied about the

two training sessions and the training in its entirety.

4.1 | Discussion of main findings

This study was, as far as we know, the first one whereby the use of a single BCT was trained and evaluated. This

is an innovative way of training since previous studies did not recognize and labelled BCTs used explicitly and

often lacked a theoretical base for the intervention researched (Willems et al., 2017). It is therefore important

for changing lifestyle behaviour to set small steps towards healthier lifestyle behaviour which can be measured

and evaluated in an unambiguous way. For future research, this training concept could be used also to train

professional caregivers in other promising BCTs to improve lifestyle behaviour of adults with mild ID.

Since “Action planning” was a promising BCT (Willems et al., 2019) but not used much in clinical practice (Willems

et al., 2019b), we chose this BCT as a focus of supporting professional caregivers. However, the use of a single

BCT needs to be reviewed in relation to other BCTs. For example: “Action planning” could be related to the BCT

“goal setting (of behaviour)”, since one has to know which action has to be planned before it can be planned. So

in clinical practice, a single BCT might not always be used separately. For future training of professional

caregivers, this is useful to keep in mind. Thereby, future research could examine which BCTs are (inter)related

to each other, in which ways, and how they can be combined in clinical practice to support lifestyle behaviour of

adults with mild ID.

After finishing the training, professional caregivers felt more competent to plan lifestyle behaviour actions with

the adults with mild ID they supported. This is a promising finding, since competence is an important prerequisite

for performance (Rethans et al., 2002) which implicate that the training studied could influence the usage of the

BCT “Action planning”. This was supported by the significant increase of readiness to use the BCT, as reported by

professional caregivers. Since “Action planning” was rarely used by professional caregivers (Willems et al., 2019b)

but was found to be a promising BCT for changing lifestyle in adults with mild ID (Willems et al., 2019a), this

training could contribute to increased use of this BCT and thus to improved lifestyle behaviour of adults with mild

ID. As this study did not investigate the training effects on the actual use of “Action planning” by professional

caregiver, this is a recommendation for future research.

Professional caregivers described facilitators and barriers from all three categories of the COM-B system

(capability, opportunity and motivation). This is in line with a previous study about physical activity support for

adults with ID (Bossink, Van der Putten, & Vlaskamp, 2019). Most facilitators and barriers could be classified

under opportunity. This might implicate that the usage of the BCT can be increased mostly by enabling

opportunities for professional caregivers to plan lifestyle behaviour actions, such as more time and resources to

plan lifestyle behaviour actions and clear and joint agreements in a team of professional caregivers. A category

called client characteristics was added to the original COM-B system, since professional caregivers mentioned

facilitators and barriers that could not be categorized und the COM-B categories and related to specific

characteristics of the individuals with ID. This new category was used earlier (Bossink et al., 2019) but included

147

mostly barriers. It can be discussed whether resistance and motivation of adults with mild ID was a client

characteristic or that it was also the role of a professional caregiver to influence the motivation of an adult with

ID towards healthy lifestyle behaviour. It might be a combination of client responsibility towards their own

behaviour as well as the role of a professional caregiver to support a client towards healthy lifestyle behaviour.


A major strength of this study was that a theory-driven BCT was used to train professional caregivers supporting

lifestyle behaviour of adults with mild ID. This is the first study using a design of training a single BCT for

supporting of professional caregivers. The training format was also based on theory, using the problem-based

learning strategy (PBL), as well as the deductive analysis of the facilitators and barriers influencing the usage of

“Action planning” using the COM-B model. A consideration of this study could be that the training was only

offered to one team of professional caregivers. This might have influenced the results since these participants

have the same working environment and therefore probably experience the same challenges regarding the use

of “Action planning” and might have shared opinions about “Action planning”. Another team of professional

caregivers might experience other challenges and opinions which might have led to other results about

facilitators and barriers towards “Action planning”, as well as towards their readiness to use “Action planning”.

However, since this is a pilot-test of the training, the findings of this study are promising, and can be guiding for

future research in showing the usefulness of a single BCT training for professional caregivers.


To our knowledge, this is the first study investigating the effects of a training of a single BCT for professional

caregivers supporting lifestyle behaviour of adults with mild ID. A significant increase in self-experienced

competence and readiness to use the BCT was found after participating in a training in “Action planning”.

Facilitators and barriers mostly fell in the category ‘opportunity’. Since professional caregivers were trainable

and they experienced training needs regarding lifestyle behaviour support of adults with mild ID, research of

training in other suitable, single BCTs is recommended. Since the effects of the training on the use of the BCT and

the lifestyle behaviour of adults with mild ID were not researched in this study, further research is necessary to

determine whether training affects the use of “Action planning” and whether the lifestyle behaviour of adults

becomes healthier.

4.4 | Conclusion

This study researched a training in the BCT “Action planning” supporting professional caregivers, in the use of

BCT’s and their readiness to plan lifestyle behaviour actions of adults with mild ID. Training in the BCT “Action

planning” may support professional caregivers in the use of BCT’s and their readiness to plan lifestyle behaviour

actions.



138541-Willems_BNW.indd 147 31-10-19 10:08

148

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professionals’ perspective. Disability and Rehabilitation, 1-7.

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education: Theory and practice (pp. 3–13). San Francisco: Jossey-Bass.

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behaviour change and implementation research. Implementation science, 7(1), 37.

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internationalization. Journal of Studies in International Education, 10(3), 241-266.

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model of collaborative, interorganisational innovation. European Journal of Training and

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analysis from the angle of assessment. Review of Educational Research, 75(1), 27-61.




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characterising and designing behaviour change interventions. Implementation Science, 6(1), 42.


promotion programs. Health Promotion Journal of Australia: Official Journal of Australian

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Prochaska, J. O., & Velicer, W. F. (1997). The transtheoretical model of health behavior change. American

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adolescent and young adult women and men with and without intellectual disability. Journal of

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151

APPENDIX – Questionnaire used to measure outcome measures

1) To what extent do you agree with the statements below?

Item 5 point VAS-scale (Not agree – Agree)

I am aware what healthy lifestyle behaviour is for the adults

with mild ID who I support

I have enough practical knowledge and skills to plan healthy

lifestyle behaviour with the adults with mild ID who I

support

I have enough (game) materials to plan healthy lifestyle

behaviour.

I feel supported by my superiors/managers when planning

healthy lifestyle behaviour with the adults with mild ID who

I support

I believe that planning healthy lifestyle behaviour is so

important that I will do anything to plan it in the daily

schedule of the adults with mild ID who I support

I think planning healthy lifestyle behaviour is a fun part of

my work.

I have sufficient skills to plan healthy lifestyle behaviour

with adults with mild ID

I have sufficient knowledge to plan healthy behaviour with

the adults with mild ID who I support

2) I plan healthy lifestyle behaviour with the adults with mild ID who I support:

o Yes, this has been part of my job for at least 6 months

o Yes, I made this part of my job recently (less than 6 months ago)

o No, but I am willing to make this part of my job in the near future

o No, but I want to make this part of my job later on

o No, and I am not willing to make this part of my job

3) What would support you in planning healthy lifestyle behaviour with the adults with mild ID you support?

4) What impedes you to plan healthy lifestyle behaviour with the adults with mild ID you support?

138541-Willems_BNW.indd 150 31-10-19 10:08

150

Vereniging Gehandicaptenzorg Nederland (2015). Landelijk competentieprofiel voor beroepskrachten (niveau

ABC) in het primaire proces van de gehandicaptenzorg [National competence profile for professionals

(level ABC) in the primary process of care for persons with intellectual disabilities]. Retrieved from

https://legacy.vgn.nl/media/551d3516b1900/Beroepscompetentieprofiel+ABC+dig.pdf?_ga=2.190538

024.2005256991.1560422018-153282600.1560422018


Heart rate and physical activity patterns in persons with profound intellectual and multiple

disabilities. The Journal of Strength and Conditioning Research, 27(11), 3150-3158.





Melville, C. A. (2018). Effects of lifestyle change interventions for people with intellectual

disabilities: systematic review and meta-analysis of randomized controlled trials. Journal of


Willems, M., Waninge, A., De Jong, J.., Hilgenkamp, T. I. M., & Van der Schans, C. P. (2019a). Exploration of suitable

behaviour change techniques for lifestyle change of individuals with mild intellectual disabilities: A

Delphi study’. Journal of Applied Research in Intellectual Disabilities, 32(3), 543-557.

Willems, M., De Jong, J., Overwijk, A., Hilgenkamp, T. I. M., Van der Schans C. P., Waninge, A., (2019b). Use of

behaviour change techniques in daily support of adults with mild intellectual disabilities. Article in

preparation.

151

APPENDIX – Questionnaire used to measure outcome measures

1) To what extent do you agree with the statements below?

Item 5 point VAS-scale (Not agree – Agree)

I am aware what healthy lifestyle behaviour is for the adults

with mild ID who I support

I have enough practical knowledge and skills to plan healthy

lifestyle behaviour with the adults with mild ID who I

support

I have enough (game) materials to plan healthy lifestyle

behaviour.

I feel supported by my superiors/managers when planning

healthy lifestyle behaviour with the adults with mild ID who

I support

I believe that planning healthy lifestyle behaviour is so

important that I will do anything to plan it in the daily

schedule of the adults with mild ID who I support

I think planning healthy lifestyle behaviour is a fun part of

my work.

I have sufficient skills to plan healthy lifestyle behaviour

with adults with mild ID

I have sufficient knowledge to plan healthy behaviour with

the adults with mild ID who I support

2) I plan healthy lifestyle behaviour with the adults with mild ID who I support:

o Yes, this has been part of my job for at least 6 months

o Yes, I made this part of my job recently (less than 6 months ago)

o No, but I am willing to make this part of my job in the near future

o No, but I want to make this part of my job later on

o No, and I am not willing to make this part of my job

3) What would support you in planning healthy lifestyle behaviour with the adults with mild ID you support?

4) What impedes you to plan healthy lifestyle behaviour with the adults with mild ID you support?

138541-Willems_BNW.indd 151 31-10-19 10:08

Chapter 7

General discussion

138541-Willems_BNW.indd 152 31-10-19 10:08

Chapter 7

General discussion

138541-Willems_BNW.indd 153 31-10-19 10:08

154

1 | SUMMARY OF MAIN FINDINGS

This thesis aimed to investigate the use and effectiveness of current lifestyle change interventions and suitable

behaviour change techniques (BCTs) for professional caregivers to support adults with mild ID to change their

lifestyle behaviour.

First the current level of evidence of lifestyle change interventions for adults with ID was determined. Therefore,

a systematic review and meta-analysis was conducted (Chapter 2) to investigate the effects of lifestyle change

for adults with ID. Outcome measures were categorized using the International Classification of Functioning,

Disability and Health (ICF) (World Health Organisation, 2001). Quantifiable outcome measures from the category

‘Functions’, such as weight, were used most, whereas outcome measures in the categories ‘Environmental

factors’, ‘Participation’, and ‘Personal factors’ were hardly used. Meta-analysis was only possible for three

outcome measures: BMI, weight and waist circumference. A significant decrease was found only for waist

circumference. Consensus about suitable outcome measures to evaluate lifestyle change interventions for adults

with ID is necessary to investigate future interventions. Also, a strong methodological design of studies about

lifestyle change interventions for adults with ID would help to determine potential effects of these interventions.

A systematic review was performed to identify which BCTs have been used in current lifestyle change

interventions for people with ID, aimed at physical activity, nutrition or both (Chapter 3). BCTs were used in all

interventions, but in most cases, they were used implicitly. The most frequently used BCTs were: “Provide

information on consequences of behaviour in general”, “Plan social support/social change”, “Provide instruction

on how to perform the behaviour” and “Goal setting (behaviour)”, as defined in the CALO-RE taxonomy (Michie

et al., 2011). Quality of the studies was often limited, mostly because of insufficient blinding of

patients/therapists/assessors. Thereby, most studies were not based on theory. Interventions often targeted

multiple levels of ID, mostly aiming at individuals with a mild-moderate ID level. For designing future lifestyle

change interventions, it is recommended to determine which BCTs should be included to tailor the interventions

to adults with ID, as well as using theory to substantiate the intervention.

Since there is only little evidence on the effectiveness of lifestyle change interventions in adults with ID, effective

techniques to change lifestyle behaviour could not be identified. Therefore, health care professionals were asked

about the suitability of behaviour change techniques (BCTs) in changing lifestyle behaviour of adults with mild ID

(Chapter 4). Using a Delphi method, consensus was reached for 25 out of 40 BCTs from the CALO-RE taxonomy

(Michie et al., 2011). A total of 24 BCTs was considered to be suitable in changing lifestyle of adults with mild ID.

Health care professionals agreed on the following BCTs as being the most suitable: “Barrier

identification/problem solving” (97%), “Set graded tasks” (97%), “Prompt rewards contingent on effort or

progress towards behaviour” (95%), “Motivational interviewing’ (94%) and “Action planning” (91%). The four

groups of health care professionals, (professional caregivers, behavioural scientists, allied health professionals,

and intellectual disability physicians), did not differ significantly in response regarding suitability of BCTs. For

future research about lifestyle behaviour change in adults with ID, it is advocated to include the BCTs with most

consensus to improve the effectiveness of lifestyle change interventions.

155

No scientific information about the actual use of BCTs in clinical practice supporting adults with mild ID in lifestyle

behaviour change is available, and therefore, an observation study was performed (Chapter 5). The aim of this

study was to identify if and which BCTs are used in clinical practice by professional caregivers supporting adults

with mild ID. A total of 21 out of 40 BCTs was used by professional caregivers (N=14). The BCTs mostly used were:

“Information about others approval”, “Identification as role model”, “Rewards on successful behaviour”, “Review

behavioural goals” and “Instructions on how to perform the behaviour”. However, the most promising BCTs

(including: “Barrier identification/problem solving”, “Set graded tasks”, “Prompt rewards contingent on effort or

progress towards behaviour”, “Motivational interviewing’ and “Action planning”), given high consensus rates of

a panel of health care professionals, were rarely used by professional caregivers.

In order to improve lifestyle behaviour change in adults with mild ID, an intervention was developed to train

professional caregivers supporting adults with mild ID in changing lifestyle behaviour (Chapter 6), using a

promising BCTs entitled “Action planning”. Competence of professional caregivers was significantly increased

after the training, as well as their readiness to plan lifestyle behaviour action. Professional caregivers experienced

several facilitators and barriers, most of them could be classified under the concept ‘opportunity’, and the others

were classified under the categories ‘motivation’, ‘capability’ and ‘client characteristics’. The use of the BCT

“Action planning” could be increased by enabling opportunities to plan lifestyle behaviour actions. In future

research this training could be used as an example for designing lifestyle trainings tailored to professional

caregivers of adults with mild ID.

2 | DISCUSSION OF MAIN FINDINGS AND IMPLICATIONS FOR FUTURE RESEARCH

2.1 | Lifestyle change interventions supporting adults with intellectual disabilities

There are varying levels of intellectual disabilities, ranging from mild to profound ID (Schalock et al., 2002). The

severity of ID is related to the degree of support needs in adaptive functioning and daily life skills (American

Psychiatric Association, 2013). However, current lifestyle change interventions are often aiming at the whole

range of ID levels. This might have influenced the effectiveness of the interventions, because it could be very

hard to meet the specific needs of adults with different levels of ID. Adults with mild ID are more self-sufficient

than adults with more severe levels of ID. They might need more assistance with social interaction in daily living

to do their jobs and to live independently, whereas adults with more severe ID are dependent from others for

their self-care and activities of daily living. It is therefore important to tailor future lifestyle change interventions

to specific level of ID of an individual.

2.2 | Changing lifestyle behaviour in adults with mild intellectual disabilities

BCTs could be suitable in changing lifestyle for adults with mild ID, which is important knowledge for clinical

practice and guiding for future research. However, effectiveness of these BCTs is still unknown. For the general

population, BCTs have been found to positively affect lifestyle behaviour, but it is still complicated to change

behaviour in an effective and sustainable way. For reasons of dependency on others and cognitive limitations,

changing lifestyle change in adults with mild ID is expected to be at least as complicated as it is for the general

population. Personal interests, living situation, social and emotional functioning, as well as the relationship and

138541-Willems_BNW.indd 154 31-10-19 10:08

154

1 | SUMMARY OF MAIN FINDINGS

This thesis aimed to investigate the use and effectiveness of current lifestyle change interventions and suitable

behaviour change techniques (BCTs) for professional caregivers to support adults with mild ID to change their

lifestyle behaviour.

First the current level of evidence of lifestyle change interventions for adults with ID was determined. Therefore,

a systematic review and meta-analysis was conducted (Chapter 2) to investigate the effects of lifestyle change

for adults with ID. Outcome measures were categorized using the International Classification of Functioning,

Disability and Health (ICF) (World Health Organisation, 2001). Quantifiable outcome measures from the category

‘Functions’, such as weight, were used most, whereas outcome measures in the categories ‘Environmental

factors’, ‘Participation’, and ‘Personal factors’ were hardly used. Meta-analysis was only possible for three

outcome measures: BMI, weight and waist circumference. A significant decrease was found only for waist

circumference. Consensus about suitable outcome measures to evaluate lifestyle change interventions for adults

with ID is necessary to investigate future interventions. Also, a strong methodological design of studies about

lifestyle change interventions for adults with ID would help to determine potential effects of these interventions.

A systematic review was performed to identify which BCTs have been used in current lifestyle change

interventions for people with ID, aimed at physical activity, nutrition or both (Chapter 3). BCTs were used in all

interventions, but in most cases, they were used implicitly. The most frequently used BCTs were: “Provide

information on consequences of behaviour in general”, “Plan social support/social change”, “Provide instruction

on how to perform the behaviour” and “Goal setting (behaviour)”, as defined in the CALO-RE taxonomy (Michie

et al., 2011). Quality of the studies was often limited, mostly because of insufficient blinding of

patients/therapists/assessors. Thereby, most studies were not based on theory. Interventions often targeted

multiple levels of ID, mostly aiming at individuals with a mild-moderate ID level. For designing future lifestyle

change interventions, it is recommended to determine which BCTs should be included to tailor the interventions

to adults with ID, as well as using theory to substantiate the intervention.

Since there is only little evidence on the effectiveness of lifestyle change interventions in adults with ID, effective

techniques to change lifestyle behaviour could not be identified. Therefore, health care professionals were asked

about the suitability of behaviour change techniques (BCTs) in changing lifestyle behaviour of adults with mild ID

(Chapter 4). Using a Delphi method, consensus was reached for 25 out of 40 BCTs from the CALO-RE taxonomy

(Michie et al., 2011). A total of 24 BCTs was considered to be suitable in changing lifestyle of adults with mild ID.

Health care professionals agreed on the following BCTs as being the most suitable: “Barrier

identification/problem solving” (97%), “Set graded tasks” (97%), “Prompt rewards contingent on effort or

progress towards behaviour” (95%), “Motivational interviewing’ (94%) and “Action planning” (91%). The four

groups of health care professionals, (professional caregivers, behavioural scientists, allied health professionals,

and intellectual disability physicians), did not differ significantly in response regarding suitability of BCTs. For

future research about lifestyle behaviour change in adults with ID, it is advocated to include the BCTs with most

consensus to improve the effectiveness of lifestyle change interventions.

155

No scientific information about the actual use of BCTs in clinical practice supporting adults with mild ID in lifestyle

behaviour change is available, and therefore, an observation study was performed (Chapter 5). The aim of this

study was to identify if and which BCTs are used in clinical practice by professional caregivers supporting adults

with mild ID. A total of 21 out of 40 BCTs was used by professional caregivers (N=14). The BCTs mostly used were:

“Information about others approval”, “Identification as role model”, “Rewards on successful behaviour”, “Review

behavioural goals” and “Instructions on how to perform the behaviour”. However, the most promising BCTs

(including: “Barrier identification/problem solving”, “Set graded tasks”, “Prompt rewards contingent on effort or

progress towards behaviour”, “Motivational interviewing’ and “Action planning”), given high consensus rates of

a panel of health care professionals, were rarely used by professional caregivers.

In order to improve lifestyle behaviour change in adults with mild ID, an intervention was developed to train

professional caregivers supporting adults with mild ID in changing lifestyle behaviour (Chapter 6), using a

promising BCTs entitled “Action planning”. Competence of professional caregivers was significantly increased

after the training, as well as their readiness to plan lifestyle behaviour action. Professional caregivers experienced

several facilitators and barriers, most of them could be classified under the concept ‘opportunity’, and the others

were classified under the categories ‘motivation’, ‘capability’ and ‘client characteristics’. The use of the BCT

“Action planning” could be increased by enabling opportunities to plan lifestyle behaviour actions. In future

research this training could be used as an example for designing lifestyle trainings tailored to professional

caregivers of adults with mild ID.

2 | DISCUSSION OF MAIN FINDINGS AND IMPLICATIONS FOR FUTURE RESEARCH

2.1 | Lifestyle change interventions supporting adults with intellectual disabilities

There are varying levels of intellectual disabilities, ranging from mild to profound ID (Schalock et al., 2002). The

severity of ID is related to the degree of support needs in adaptive functioning and daily life skills (American

Psychiatric Association, 2013). However, current lifestyle change interventions are often aiming at the whole

range of ID levels. This might have influenced the effectiveness of the interventions, because it could be very

hard to meet the specific needs of adults with different levels of ID. Adults with mild ID are more self-sufficient

than adults with more severe levels of ID. They might need more assistance with social interaction in daily living

to do their jobs and to live independently, whereas adults with more severe ID are dependent from others for

their self-care and activities of daily living. It is therefore important to tailor future lifestyle change interventions

to specific level of ID of an individual.

2.2 | Changing lifestyle behaviour in adults with mild intellectual disabilities

BCTs could be suitable in changing lifestyle for adults with mild ID, which is important knowledge for clinical

practice and guiding for future research. However, effectiveness of these BCTs is still unknown. For the general

population, BCTs have been found to positively affect lifestyle behaviour, but it is still complicated to change

behaviour in an effective and sustainable way. For reasons of dependency on others and cognitive limitations,

changing lifestyle change in adults with mild ID is expected to be at least as complicated as it is for the general

population. Personal interests, living situation, social and emotional functioning, as well as the relationship and

138541-Willems_BNW.indd 155 31-10-19 10:08

156

interaction between adults with mild ID and their caregivers may have a great impact on the suitability and

effectiveness of BCTs. Keeping personal characteristics as well as interpersonal relationship in mind is necessary

for future interventions and research. However, it should not be a reason to stop striving to healthy lifestyle

behaviour for this vulnerable group, since improvement of a healthy lifestyle is necessary and seems to be

possible.

Professional caregivers are important for adults with mild ID (Ptomey et al., 2018; Spanos et al., 2013) and were

therefore included as the main focus of this thesis. However, professional caregivers are not the only important

social contacts of adults with mild ID. Family and friends play an important role as well (Miller, Cooper, Cook, &

Petch, 2008). In addition to the social environment, also the physical environment and policies (e.g. policies of

ID care organizations) should be taken in account in future lifestyle change interventions (Steenbergen et al.,

2019). So, all levels that influence health behaviour (including the intrapersonal and interpersonal level as well

as organizational and community factors and public policy) need to be targeted to change lifestyle behaviour, as

emphasized in the ecological model of active living (McLeroy, Bibeau, Steckler, & Glanz, 1988). Acting

unambiguously from a shared vision by all levels, as well as creating opportunities to use suitable BCTs, could be

key factors for successful and sustainable lifestyle behaviour change.

Training professional caregivers in behaviour change is important to improve future lifestyle support for adults

with mild ID. The training in ‘action planning’ is an example of how individual BCTs can be taught to professional

caregivers and how they can be evaluated. This is important, because training in a single BCT allows for

investigation of its individual effectiveness. On the other hand, it is hard to use BCTs independently, since most

BCTs are in some way related to other BCTs. For example: the BCT ‘action planning’ is related to the BCT goal

setting (behaviour)’ as well as ‘goal setting (outcome)’, since you cannot plan any action if you do not know which

action you want to plan. ‘Action planning’ will probably be used together with BCTs like ‘Barrier

identification/Problem solving’, ‘Set graded tasks’ and ‘Provide information on where and when to perform the

behaviour’. Training of single BCTs is necessary for the professional caregivers to understand how to use the BCT

in clinical practice and to investigate suitability and effects of the BCT. At the same time, it is important not to

lose sight on connections between other important BCTs.

Adults with mild ID included in the studies of this thesis were diagnosed as having a mild intellectual disability.

In definitions of mild ID currently used, IQ levels on itself are not enough to diagnose someone having a mild ID.

Also, issues regarding adaptive skills and long term needs for support in daily life need to be identified (American

Psychiatric Association, 2013). In the Netherlands, this shift from the focus on IQ level only to a broader view on

ID was also made to determine support needs and corresponding financial resources for professional support.

This made it possible for persons with borderline cognitive functioning (IQ score 70-85) to get access to ID health

care when necessary (Moonen & Verstegen, 2006). In line with this focus on support needs, a tailored lifestyle

behaviour training was developed (Chapter 6). Since the current situation of lifestyle behaviour support in adults

with mild ID was determined first, the training met training needs of professional caregivers. Thereby, a

theoretical foundation was used since suitable BCTs specifically for adults with mild ID were defined and

compared to BCTs already used by professional caregivers in daily support of adults with mild ID. In future

157

research, a similar approach could be considered to meet lifestyle support for adults with (mild) ID specifically,

since these group could benefit from a tailored lifestyle behaviour approach.

3 | METHODOLOGICAL CONSIDERATIONS/ISSUES

Participating health care professionals included in this thesis were invited by staff management of Dutch ID care

organizations. These organizations participated in a Dutch lifestyle research consortium, aiming to improve and

maintain healthy lifestyle behaviour of their caretakers. As participants were not randomly selected, this

increased the risk of selection bias towards participating health care professionals who were already interested

in lifestyle and lifestyle behaviour change. This might have influenced the results since others who were less

interested in lifestyle might consider a smaller number of BCTs as suitable, may have used less BCTs in changing

lifestyle or might be less positive about the training in ‘action planning’. On the other hand, participants who are

not very interested in lifestyle behaviour could possibly benefit more from training in changing lifestyle behaviour

and that could have increased the effectiveness of the training. For future research, it might be useful to think

about ways to reach professional caregivers who are less motivated to be involved in lifestyle behaviour change.

For example, using the diffusion of innovation theory (Rogers, 1983), professional caregivers who are interested

in lifestyle behaviour change could act as ambassadors and promote the training and use of BCTs to change

lifestyle behaviour. Since a lack of opportunity was mostly mentioned as impeding for lifestyle change support

(Chapter 6), it may help when organisations support less motivated professional caregivers by providing time

and resources as well as encouraging policy and agreements within teams of professionals about lifestyle support


The methodological quality of lifestyle behaviour change studies so far was usually not high. One of the aims of

this thesis was to contribute to a more thorough way of research by using small steps to gather knew insights

and using these insights to train professionals. However, some methodological considerations remained, such as

small sample sizes and some practical considerations, e.g. the exclusion of adults with mild ID receiving only

ambulatory support. Therefore, future research about lifestyle behaviour change could be optimized using a

thorough design, including a theoretical foundation and outcome measures appropriate for adults with mild ID,

larger sample sizes and small steps towards knew insights.

The used CALO-RE taxonomy was designed for interventions aiming to improve physical activity and nutrition.

This thesis is one of the first using the CALO-RE taxonomy for adults with mild ID, as the taxonomy was designed

for the general population. On the one hand, this taxonomy provided a theoretical framework to this thesis. On

the other hand, it was necessary to adapt some of the definitions of BCTs to make the taxonomy suitable for use

in clinical practice of lifestyle support in adults with mild ID. Despite our best efforts, adapting the taxonomy may

have led to small changes in the interpretation of the BCTs, which makes comparisons slightly more difficult. For

example: BCTs were often formulated as prompting someone to do something (independent), but in clinical

practice professional caregivers often help adults with mild ID to start with a behaviour or even perform the

behaviour together. Recently, a new version of the taxonomy was designed entitled the ‘BCT Taxonomy v1’

(Michie et al., 2013). Since the BCT Taxonomy v1 consisted of many BCTs (93 BCTs), the version with fewer items

138541-Willems_BNW.indd 156 31-10-19 10:08

156

interaction between adults with mild ID and their caregivers may have a great impact on the suitability and

effectiveness of BCTs. Keeping personal characteristics as well as interpersonal relationship in mind is necessary

for future interventions and research. However, it should not be a reason to stop striving to healthy lifestyle

behaviour for this vulnerable group, since improvement of a healthy lifestyle is necessary and seems to be

possible.

Professional caregivers are important for adults with mild ID (Ptomey et al., 2018; Spanos et al., 2013) and were

therefore included as the main focus of this thesis. However, professional caregivers are not the only important

social contacts of adults with mild ID. Family and friends play an important role as well (Miller, Cooper, Cook, &

Petch, 2008). In addition to the social environment, also the physical environment and policies (e.g. policies of

ID care organizations) should be taken in account in future lifestyle change interventions (Steenbergen et al.,

2019). So, all levels that influence health behaviour (including the intrapersonal and interpersonal level as well

as organizational and community factors and public policy) need to be targeted to change lifestyle behaviour, as

emphasized in the ecological model of active living (McLeroy, Bibeau, Steckler, & Glanz, 1988). Acting

unambiguously from a shared vision by all levels, as well as creating opportunities to use suitable BCTs, could be

key factors for successful and sustainable lifestyle behaviour change.

Training professional caregivers in behaviour change is important to improve future lifestyle support for adults

with mild ID. The training in ‘action planning’ is an example of how individual BCTs can be taught to professional

caregivers and how they can be evaluated. This is important, because training in a single BCT allows for

investigation of its individual effectiveness. On the other hand, it is hard to use BCTs independently, since most

BCTs are in some way related to other BCTs. For example: the BCT ‘action planning’ is related to the BCT goal

setting (behaviour)’ as well as ‘goal setting (outcome)’, since you cannot plan any action if you do not know which

action you want to plan. ‘Action planning’ will probably be used together with BCTs like ‘Barrier

identification/Problem solving’, ‘Set graded tasks’ and ‘Provide information on where and when to perform the

behaviour’. Training of single BCTs is necessary for the professional caregivers to understand how to use the BCT

in clinical practice and to investigate suitability and effects of the BCT. At the same time, it is important not to

lose sight on connections between other important BCTs.

Adults with mild ID included in the studies of this thesis were diagnosed as having a mild intellectual disability.

In definitions of mild ID currently used, IQ levels on itself are not enough to diagnose someone having a mild ID.

Also, issues regarding adaptive skills and long term needs for support in daily life need to be identified (American

Psychiatric Association, 2013). In the Netherlands, this shift from the focus on IQ level only to a broader view on

ID was also made to determine support needs and corresponding financial resources for professional support.

This made it possible for persons with borderline cognitive functioning (IQ score 70-85) to get access to ID health

care when necessary (Moonen & Verstegen, 2006). In line with this focus on support needs, a tailored lifestyle

behaviour training was developed (Chapter 6). Since the current situation of lifestyle behaviour support in adults

with mild ID was determined first, the training met training needs of professional caregivers. Thereby, a

theoretical foundation was used since suitable BCTs specifically for adults with mild ID were defined and

compared to BCTs already used by professional caregivers in daily support of adults with mild ID. In future

157

research, a similar approach could be considered to meet lifestyle support for adults with (mild) ID specifically,

since these group could benefit from a tailored lifestyle behaviour approach.

3 | METHODOLOGICAL CONSIDERATIONS/ISSUES

Participating health care professionals included in this thesis were invited by staff management of Dutch ID care

organizations. These organizations participated in a Dutch lifestyle research consortium, aiming to improve and

maintain healthy lifestyle behaviour of their caretakers. As participants were not randomly selected, this

increased the risk of selection bias towards participating health care professionals who were already interested

in lifestyle and lifestyle behaviour change. This might have influenced the results since others who were less

interested in lifestyle might consider a smaller number of BCTs as suitable, may have used less BCTs in changing

lifestyle or might be less positive about the training in ‘action planning’. On the other hand, participants who are

not very interested in lifestyle behaviour could possibly benefit more from training in changing lifestyle behaviour

and that could have increased the effectiveness of the training. For future research, it might be useful to think

about ways to reach professional caregivers who are less motivated to be involved in lifestyle behaviour change.

For example, using the diffusion of innovation theory (Rogers, 1983), professional caregivers who are interested

in lifestyle behaviour change could act as ambassadors and promote the training and use of BCTs to change

lifestyle behaviour. Since a lack of opportunity was mostly mentioned as impeding for lifestyle change support

(Chapter 6), it may help when organisations support less motivated professional caregivers by providing time

and resources as well as encouraging policy and agreements within teams of professionals about lifestyle support


The methodological quality of lifestyle behaviour change studies so far was usually not high. One of the aims of

this thesis was to contribute to a more thorough way of research by using small steps to gather knew insights

and using these insights to train professionals. However, some methodological considerations remained, such as

small sample sizes and some practical considerations, e.g. the exclusion of adults with mild ID receiving only

ambulatory support. Therefore, future research about lifestyle behaviour change could be optimized using a

thorough design, including a theoretical foundation and outcome measures appropriate for adults with mild ID,

larger sample sizes and small steps towards knew insights.

The used CALO-RE taxonomy was designed for interventions aiming to improve physical activity and nutrition.

This thesis is one of the first using the CALO-RE taxonomy for adults with mild ID, as the taxonomy was designed

for the general population. On the one hand, this taxonomy provided a theoretical framework to this thesis. On

the other hand, it was necessary to adapt some of the definitions of BCTs to make the taxonomy suitable for use

in clinical practice of lifestyle support in adults with mild ID. Despite our best efforts, adapting the taxonomy may

have led to small changes in the interpretation of the BCTs, which makes comparisons slightly more difficult. For

example: BCTs were often formulated as prompting someone to do something (independent), but in clinical

practice professional caregivers often help adults with mild ID to start with a behaviour or even perform the

behaviour together. Recently, a new version of the taxonomy was designed entitled the ‘BCT Taxonomy v1’

(Michie et al., 2013). Since the BCT Taxonomy v1 consisted of many BCTs (93 BCTs), the version with fewer items

138541-Willems_BNW.indd 157 31-10-19 10:08

158

was used in order to explore if this taxonomy would also be suitable for adults with ID. Moreover, for practical

reasons, a smaller number of BCT’s would be more feasible for use in a Delphi panel. It might have been better

to use the newer taxonomy whereas this version would have implemented the newest knowledge and insights.

Since the BCT Taxonomy v1 consists of more BCTs, it might be more complete than the CALO-RE taxonomy. As

both taxonomies were not designed for the ID population, the taxonomy still had to be adapted. Using the CALO-

RE taxonomy gave us the opportunity to suggest some changes and new techniques specifically for adults with

mild ID, without making the list of BCTs more extensive.

4 | IMPLICATIONS FOR CLINICAL PRACTICE, POLICY AND RESEARCH

“Theory without practice is empty; practice without theory is blind” (Immanuel Kant) – Researchers should never

lose the higher goal of supporting practice with their research, whereas health care professionals need the

knowledge gathered by science. Therefore, it is important that health care professionals and researchers co-

operate with the common goal to improve lifestyle behaviour of adults with mild ID. Thereby, clinical practice is

recommended to use the most suitable BCTs founded in the Delphi study (Chapter 4), as well as the training in

‘action planning’ (Chapter 6).

“We do not learn from experience. We learn from reflecting on experience” (John Dewey) – Since much is still

unknown about the use of BCTs to change lifestyle behaviour in adults with mild ID, clinical practice cannot rely

on merely scientific theory. However, instead of becoming passive about healthy lifestyle behaviour, clinical

practice could better use BCTs in an evidence-informed way: using BCTs consciously to change lifestyle behaviour

and reflect on this use until new insights are found, for example by using BCTs which are effective for the general

population.

“If you have knowledge, let others light their candles in it” (Margaret Fuller) – Clinical practice cannot use

knowledge found in research when knowledge is not shared. This implicates that researchers should share their

knowledge not only by scientific articles and presentations, but also through information channels used by

clinical practice. In turn, participation of health care professionals is essential to gather the knowledge necessary

for clinical practice. Also, health care professionals should find ways to share their knowledge with each other,

for example using workshops, conferences, presentations and (online) sharing communities. The Dutch ID care

consort (“Innovatiewerkplaats Active Ageing van mensen met een verstandelijke beperking”) is an example of

sharing information with each other without direct self-interest.

“Never change a winning team” (Alf Ramsey) – Whenever effective strategies are found to changing lifestyle

behaviour of adults with ID, keep using this strategy. This does not imply that reflection and evaluation are not

necessary any more, but constantly switching between strategies does not improve clinical practice nor does it

contributes to knowledge enhancement.

“Disability is the inability to see ability” (Vikas Khanna) – In this thesis, a lifestyle behaviour change approach that

is adapted and therefore suitable for adults with mild ID, given their limitations in social adaptive functioning and

continuing need for support in daily life. It is important to start from and adapt to someone’s abilities and

159

opportunities. A focus on needs is necessary only to help other people in a better way, not to see them as disabled

persons. Keeping this in mind might help to serve the persons for which we performed this thesis, in scientific

research as well as in clinical practice.

“Being a good example is the best form of service” (Sathya Sai Baba) – Using BCTs might help to change lifestyle

behaviour of adults with mild ID, but motivating and stimulating other people to change their behaviour might

work better when the health care professional himself shows healthy lifestyle behaviour. This might be the best

service a health care professional can serve the adult with mild ID.

138541-Willems_BNW.indd 158 31-10-19 10:08

158

was used in order to explore if this taxonomy would also be suitable for adults with ID. Moreover, for practical

reasons, a smaller number of BCT’s would be more feasible for use in a Delphi panel. It might have been better

to use the newer taxonomy whereas this version would have implemented the newest knowledge and insights.

Since the BCT Taxonomy v1 consists of more BCTs, it might be more complete than the CALO-RE taxonomy. As

both taxonomies were not designed for the ID population, the taxonomy still had to be adapted. Using the CALO-

RE taxonomy gave us the opportunity to suggest some changes and new techniques specifically for adults with

mild ID, without making the list of BCTs more extensive.

4 | IMPLICATIONS FOR CLINICAL PRACTICE, POLICY AND RESEARCH

“Theory without practice is empty; practice without theory is blind” (Immanuel Kant) – Researchers should never

lose the higher goal of supporting practice with their research, whereas health care professionals need the

knowledge gathered by science. Therefore, it is important that health care professionals and researchers co-

operate with the common goal to improve lifestyle behaviour of adults with mild ID. Thereby, clinical practice is

recommended to use the most suitable BCTs founded in the Delphi study (Chapter 4), as well as the training in

‘action planning’ (Chapter 6).

“We do not learn from experience. We learn from reflecting on experience” (John Dewey) – Since much is still

unknown about the use of BCTs to change lifestyle behaviour in adults with mild ID, clinical practice cannot rely

on merely scientific theory. However, instead of becoming passive about healthy lifestyle behaviour, clinical

practice could better use BCTs in an evidence-informed way: using BCTs consciously to change lifestyle behaviour

and reflect on this use until new insights are found, for example by using BCTs which are effective for the general

population.

“If you have knowledge, let others light their candles in it” (Margaret Fuller) – Clinical practice cannot use

knowledge found in research when knowledge is not shared. This implicates that researchers should share their

knowledge not only by scientific articles and presentations, but also through information channels used by

clinical practice. In turn, participation of health care professionals is essential to gather the knowledge necessary

for clinical practice. Also, health care professionals should find ways to share their knowledge with each other,

for example using workshops, conferences, presentations and (online) sharing communities. The Dutch ID care

consort (“Innovatiewerkplaats Active Ageing van mensen met een verstandelijke beperking”) is an example of

sharing information with each other without direct self-interest.

“Never change a winning team” (Alf Ramsey) – Whenever effective strategies are found to changing lifestyle

behaviour of adults with ID, keep using this strategy. This does not imply that reflection and evaluation are not

necessary any more, but constantly switching between strategies does not improve clinical practice nor does it

contributes to knowledge enhancement.

“Disability is the inability to see ability” (Vikas Khanna) – In this thesis, a lifestyle behaviour change approach that

is adapted and therefore suitable for adults with mild ID, given their limitations in social adaptive functioning and

continuing need for support in daily life. It is important to start from and adapt to someone’s abilities and

159

opportunities. A focus on needs is necessary only to help other people in a better way, not to see them as disabled

persons. Keeping this in mind might help to serve the persons for which we performed this thesis, in scientific

research as well as in clinical practice.

“Being a good example is the best form of service” (Sathya Sai Baba) – Using BCTs might help to change lifestyle

behaviour of adults with mild ID, but motivating and stimulating other people to change their behaviour might

work better when the health care professional himself shows healthy lifestyle behaviour. This might be the best

service a health care professional can serve the adult with mild ID.

138541-Willems_BNW.indd 159 31-10-19 10:08

160

REFERENCES








Michie, S., Richardson, M., Johnston, M., Abraham, C., Francis, J., Hardeman, W., . . . Wood, C. E. (2013). The

behavior change technique taxonomy (v1) of 93 hierarchically clustered techniques: Building an

international consensus for the reporting of behaviour change interventions. Annals of Behavioral

Medicine, 46(1), 81–95.

Miller, E., Cooper, S. A., Cook, A., & Petch, A. (2008). Outcomes important to people with intellectual

disabilities. Journal of Policy and Practice in Intellectual Disabilities, 5(3), 150-158.

Moonen, X., & Verstegen, D. (2006). LVG-jeugd met ernstige gedragsproblematiek in de verbinding van praktijk

en wetgeving [Youth with mild intellectual disability and severe problem behavior in the connection of

practice and law]. Onderzoek en Praktijk, 4(1), 23–28.




31(Suppl. 1), 82-96.

Rogers, E. M. (1983). Diffusion of innovations. New York: Free Press.



Disabilities: Report of an International Panel of Experts. Mental Retardation, 40(6), 457-470.







World Health Organization (WHO) (2001). International classification of functioning, disability and health:

ICF. Geneva, Switzerland: World Health Organisation.

138541-Willems_BNW.indd 160 31-10-19 10:08

160

REFERENCES








Michie, S., Richardson, M., Johnston, M., Abraham, C., Francis, J., Hardeman, W., . . . Wood, C. E. (2013). The

behavior change technique taxonomy (v1) of 93 hierarchically clustered techniques: Building an

international consensus for the reporting of behaviour change interventions. Annals of Behavioral

Medicine, 46(1), 81–95.

Miller, E., Cooper, S. A., Cook, A., & Petch, A. (2008). Outcomes important to people with intellectual

disabilities. Journal of Policy and Practice in Intellectual Disabilities, 5(3), 150-158.

Moonen, X., & Verstegen, D. (2006). LVG-jeugd met ernstige gedragsproblematiek in de verbinding van praktijk

en wetgeving [Youth with mild intellectual disability and severe problem behavior in the connection of

practice and law]. Onderzoek en Praktijk, 4(1), 23–28.




31(Suppl. 1), 82-96.

Rogers, E. M. (1983). Diffusion of innovations. New York: Free Press.



Disabilities: Report of an International Panel of Experts. Mental Retardation, 40(6), 457-470.







World Health Organization (WHO) (2001). International classification of functioning, disability and health:

ICF. Geneva, Switzerland: World Health Organisation.

138541-Willems_BNW.indd 161 31-10-19 10:08

162

Nederlandse samenvatting

1 | Inleiding

Mensen met een lichte verstandelijke beperking (LVB) hebben moeite met abstract denken en ingewikkelde

denkprocessen. Ze hebben niet alleen ondersteuning nodig om hun dagelijks leven vorm te geven, maar ook bij

het leggen en onderhouden van sociale contacten en bij het omgaan met hun emoties.

Ook wat betreft gezond leven hebben mensen met een verstandelijke beperking ondersteuning nodig. Ze

ervaren meer gezondheidsproblemen dan mensen uit de algemene bevolking. Van de mensen in Nederland

behaalt slechts 44% de beweegrichtlijnen en heeft 47.7% van de volwassenen overgewicht of obesitas. In

vergelijking met de algemene populatie hebben mensen met een verstandelijke beperking een ongezondere

leefstijl: ze bewegen te weinig, zitten veel en hebben ongezonde eetgewoontes. Het is van belang om de leefstijl

van mensen met een verstandelijke beperking te verbeteren. Dit is van belang omdat een gezonde leefstijl de

kwaliteit van leven verbetert en zorgt dat er betere voorwaarden zijn om mee te doen in de samenleving. Ook

verbetert een gezonde leefstijl de zelfstandigheid in wonen en leven. De dagelijks begeleiders zijn belangrijk bij

de ondersteuning van leefstijlgedrag en gezond leven van mensen met een verstandelijke beperking. Maar het

is nog onduidelijk in hoeverre en op welke manieren de begeleider hun leefstijlgedrag beïnvloedt en of dit ook

verbeterd kan worden. Daarnaast lijken begeleiders behoefte te hebben aan training in het bevorderen van

leefstijlverandering.

Deze vragen rondom het verbeteren van leefstijlgedrag bij mensen met een verstandelijke beperking, vormden

de aanleiding voor negen zorgorganisaties (De Trans, De Zijlen, Stichting Sprank, ’s Heerenloo Zorggroep, Talant,

Cosis, Koninklijke Visio Noord Nederland, Philadelphia en Vanboeijen) om een consortium te vormen om kennis

en praktische handvatten te ontwikkelen, met als doel leefstijlbevordering te stimuleren bij mensen met een

verstandelijke beperking. Naast kennisuitwisseling wordt binnen dit consortium onderzoek uitgevoerd naar het

gebruik en de effectiviteit van leefstijlinterventies en geschikte technieken om leefstijlgedrag te veranderen door

begeleiders van mensen met een verstandelijke beperking.

2 | Leefstijlinterventies voor mensen met een verstandelijke beperking

In hoofdstuk 2 wordt een overzicht gegeven van leefstijlinterventies voor mensen met een verstandelijke

beperking, die in de literatuur zijn beschreven. Daarnaast is de effectiviteit van deze interventies onderzocht. Er

is voor gekozen om alleen artikelen te onderzoeken met een zo sterk mogelijk onderzoeksontwerp: een

Randomized Controlled Trial (RCT) ontwerp. De acht geselecteerde interventies zijn gericht op voeding en/of

fysieke activiteit. Er is gekeken naar algemene kenmerken (zoals de leeftijd van de deelnemers, mate van

verstandelijke beperking) en kenmerken van de interventie (bijv. inhoud, tijdsduur, doel, setting), evenals de

uitkomstmaten en de effecten (resultaten) van de interventie. Het ICF-model (International Classification of

Functioning, Disability and Health) is gebruikt om de uitkomstmaten in te delen naar onderliggend construct,

bijvoorbeeld lichaamssamenstelling of fysieke activiteit (bewegen). De effectiviteit van de leefstijlinterventies is

163

onderzocht door de bevindingen van de acht artikelen te combineren: een meta-analyse op uitkomstmaten, bv.

gewicht, en op onderliggend construct-niveau, bv. lichaamssamenstelling.

De leefstijlinterventies waren voornamelijk bedoeld voor mensen met een lichte tot matige verstandelijke

beperking. Ze richtten zich op fysieke activiteit (bewegen) of op een combinatie van fysieke activiteit en voeding.

Alle interventies werden in direct contact met de deelnemers uitgevoerd, meestal in groepsverband. In alle

studies was wel sprake van onderdelen die kwalitatief gezien niet optimaal waren. Zo was er in de helft van de

onderzoeken sprake van een klein aantal deelnemers aan de interventie. De onderzoeken maakten gebruik van

veel verschillende uitkomstmaten. Daardoor was het ingewikkeld om de effectiviteit van de interventies te

vergelijken. Voor drie uitkomstmaten was dit wel mogelijk, namelijk tailleomtrek, BMI (de verhouding tussen

lengte en gewicht) en gewichtsverandering. Leefstijlinterventies hadden alleen een positief effect op

tailleomtrek. Het was ook mogelijk om de uitkomstmaten op een hoger niveau te bekijken, namelijk op

constructniveau. De onderzochte constructen waren fysieke activiteit, lichaamssamenstelling en fysieke

capaciteit (conditie). Er werden geen aantoonbare effecten gevonden voor deze drie constructen. Er wordt

geconcludeerd dat leefstijlinterventies alleen effect hadden op de tailleomtrek van mensen met een

verstandelijke beperking. Dit betekent dat leefstijlinterventies op dit moment nog niet effectief genoeg zijn om

de leefstijl van mensen met een verstandelijke beperking te verbeteren. De interventies zouden kunnen worden

verbeterd door ze beter theoretisch te onderbouwen en ook door de bewuste inzet van manieren om gedrag te

veranderen bij mensen met verstandelijke beperking.

In hoofdstuk 3 wordt beschreven welke gedragsveranderingstechnieken worden gebruikt in leefstijlinterventies

voor mensen met een verstandelijke beperking, die in de literatuur zijn beschreven. Er is gekeken naar algemene

kenmerken van de mensen waar de interventies zich op richten, zoals de leeftijd van de deelnemers, mate van

verstandelijke beperking en kenmerken van de interventie (bijv. inhoud, tijdsduur, doel, setting). Daarnaast is

onderzocht welke manieren zijn gebruikt om leefstijlgedrag van mensen met een verstandelijke beperking te

veranderen, de gedragsveranderingstechnieken. Om dit te onderzoeken is gebruik gemaakt van de CALO-RE

taxonomie, een lijst van gedragsveranderingstechnieken. De 41 leefstijlinterventies die op basis van de criteria

werden geselecteerd waren gericht op fysieke activiteit, voeding of op beide. Er waren interventies voor alle

maten van verstandelijke beperking, zowel licht-matig als (zeer) ernstig. De interventies werden op veel

verschillende plekken uitgevoerd, bijvoorbeeld op school, op dagbesteding of op de woonlocatie. En ook de duur

en intensiteit van de interventies varieerde, van 1 week tot 24 maanden en qua intensiteit van iedere dag tot

maandelijks. De kwaliteit van de meeste onderzoeken was niet zo sterk en er werd weinig gebruikt gemaakt van

een theoretisch kader.

Gedragsveranderingstechnieken werden in alle interventies gebruikt. Technieken die veel werden gebruikt

waren: ‘geven van informatie over de consequenties van gedrag in het algemeen’ en ‘sociale ondersteuning’.

Echter, de gedragsveranderingstechnieken werden meestal niet specifiek als techniek genoemd in de tekst, maar

werden door de onderzoekers geïdentificeerd in de artikelen. Dat kan betekenen dat de

gedragsveranderingstechnieken niet bewust werden ingezet. Er blijkt dus nog verbetering nodig van

leefstijlinterventies, evenals verder onderzoek naar leefstijlverbetering en het gebruik van

gedragsveranderingstechnieken bij mensen met een verstandelijke beperking. De kwaliteit van veel onderzoeken

138541-Willems_BNW.indd 162 31-10-19 10:08

162

Nederlandse samenvatting

1 | Inleiding

Mensen met een lichte verstandelijke beperking (LVB) hebben moeite met abstract denken en ingewikkelde

denkprocessen. Ze hebben niet alleen ondersteuning nodig om hun dagelijks leven vorm te geven, maar ook bij

het leggen en onderhouden van sociale contacten en bij het omgaan met hun emoties.

Ook wat betreft gezond leven hebben mensen met een verstandelijke beperking ondersteuning nodig. Ze

ervaren meer gezondheidsproblemen dan mensen uit de algemene bevolking. Van de mensen in Nederland

behaalt slechts 44% de beweegrichtlijnen en heeft 47.7% van de volwassenen overgewicht of obesitas. In

vergelijking met de algemene populatie hebben mensen met een verstandelijke beperking een ongezondere

leefstijl: ze bewegen te weinig, zitten veel en hebben ongezonde eetgewoontes. Het is van belang om de leefstijl

van mensen met een verstandelijke beperking te verbeteren. Dit is van belang omdat een gezonde leefstijl de

kwaliteit van leven verbetert en zorgt dat er betere voorwaarden zijn om mee te doen in de samenleving. Ook

verbetert een gezonde leefstijl de zelfstandigheid in wonen en leven. De dagelijks begeleiders zijn belangrijk bij

de ondersteuning van leefstijlgedrag en gezond leven van mensen met een verstandelijke beperking. Maar het

is nog onduidelijk in hoeverre en op welke manieren de begeleider hun leefstijlgedrag beïnvloedt en of dit ook

verbeterd kan worden. Daarnaast lijken begeleiders behoefte te hebben aan training in het bevorderen van

leefstijlverandering.

Deze vragen rondom het verbeteren van leefstijlgedrag bij mensen met een verstandelijke beperking, vormden

de aanleiding voor negen zorgorganisaties (De Trans, De Zijlen, Stichting Sprank, ’s Heerenloo Zorggroep, Talant,

Cosis, Koninklijke Visio Noord Nederland, Philadelphia en Vanboeijen) om een consortium te vormen om kennis

en praktische handvatten te ontwikkelen, met als doel leefstijlbevordering te stimuleren bij mensen met een

verstandelijke beperking. Naast kennisuitwisseling wordt binnen dit consortium onderzoek uitgevoerd naar het

gebruik en de effectiviteit van leefstijlinterventies en geschikte technieken om leefstijlgedrag te veranderen door

begeleiders van mensen met een verstandelijke beperking.

2 | Leefstijlinterventies voor mensen met een verstandelijke beperking

In hoofdstuk 2 wordt een overzicht gegeven van leefstijlinterventies voor mensen met een verstandelijke

beperking, die in de literatuur zijn beschreven. Daarnaast is de effectiviteit van deze interventies onderzocht. Er

is voor gekozen om alleen artikelen te onderzoeken met een zo sterk mogelijk onderzoeksontwerp: een

Randomized Controlled Trial (RCT) ontwerp. De acht geselecteerde interventies zijn gericht op voeding en/of

fysieke activiteit. Er is gekeken naar algemene kenmerken (zoals de leeftijd van de deelnemers, mate van

verstandelijke beperking) en kenmerken van de interventie (bijv. inhoud, tijdsduur, doel, setting), evenals de

uitkomstmaten en de effecten (resultaten) van de interventie. Het ICF-model (International Classification of

Functioning, Disability and Health) is gebruikt om de uitkomstmaten in te delen naar onderliggend construct,

bijvoorbeeld lichaamssamenstelling of fysieke activiteit (bewegen). De effectiviteit van de leefstijlinterventies is

163

onderzocht door de bevindingen van de acht artikelen te combineren: een meta-analyse op uitkomstmaten, bv.

gewicht, en op onderliggend construct-niveau, bv. lichaamssamenstelling.

De leefstijlinterventies waren voornamelijk bedoeld voor mensen met een lichte tot matige verstandelijke

beperking. Ze richtten zich op fysieke activiteit (bewegen) of op een combinatie van fysieke activiteit en voeding.

Alle interventies werden in direct contact met de deelnemers uitgevoerd, meestal in groepsverband. In alle

studies was wel sprake van onderdelen die kwalitatief gezien niet optimaal waren. Zo was er in de helft van de

onderzoeken sprake van een klein aantal deelnemers aan de interventie. De onderzoeken maakten gebruik van

veel verschillende uitkomstmaten. Daardoor was het ingewikkeld om de effectiviteit van de interventies te

vergelijken. Voor drie uitkomstmaten was dit wel mogelijk, namelijk tailleomtrek, BMI (de verhouding tussen

lengte en gewicht) en gewichtsverandering. Leefstijlinterventies hadden alleen een positief effect op

tailleomtrek. Het was ook mogelijk om de uitkomstmaten op een hoger niveau te bekijken, namelijk op

constructniveau. De onderzochte constructen waren fysieke activiteit, lichaamssamenstelling en fysieke

capaciteit (conditie). Er werden geen aantoonbare effecten gevonden voor deze drie constructen. Er wordt

geconcludeerd dat leefstijlinterventies alleen effect hadden op de tailleomtrek van mensen met een

verstandelijke beperking. Dit betekent dat leefstijlinterventies op dit moment nog niet effectief genoeg zijn om

de leefstijl van mensen met een verstandelijke beperking te verbeteren. De interventies zouden kunnen worden

verbeterd door ze beter theoretisch te onderbouwen en ook door de bewuste inzet van manieren om gedrag te

veranderen bij mensen met verstandelijke beperking.

In hoofdstuk 3 wordt beschreven welke gedragsveranderingstechnieken worden gebruikt in leefstijlinterventies

voor mensen met een verstandelijke beperking, die in de literatuur zijn beschreven. Er is gekeken naar algemene

kenmerken van de mensen waar de interventies zich op richten, zoals de leeftijd van de deelnemers, mate van

verstandelijke beperking en kenmerken van de interventie (bijv. inhoud, tijdsduur, doel, setting). Daarnaast is

onderzocht welke manieren zijn gebruikt om leefstijlgedrag van mensen met een verstandelijke beperking te

veranderen, de gedragsveranderingstechnieken. Om dit te onderzoeken is gebruik gemaakt van de CALO-RE

taxonomie, een lijst van gedragsveranderingstechnieken. De 41 leefstijlinterventies die op basis van de criteria

werden geselecteerd waren gericht op fysieke activiteit, voeding of op beide. Er waren interventies voor alle

maten van verstandelijke beperking, zowel licht-matig als (zeer) ernstig. De interventies werden op veel

verschillende plekken uitgevoerd, bijvoorbeeld op school, op dagbesteding of op de woonlocatie. En ook de duur

en intensiteit van de interventies varieerde, van 1 week tot 24 maanden en qua intensiteit van iedere dag tot

maandelijks. De kwaliteit van de meeste onderzoeken was niet zo sterk en er werd weinig gebruikt gemaakt van

een theoretisch kader.

Gedragsveranderingstechnieken werden in alle interventies gebruikt. Technieken die veel werden gebruikt

waren: ‘geven van informatie over de consequenties van gedrag in het algemeen’ en ‘sociale ondersteuning’.

Echter, de gedragsveranderingstechnieken werden meestal niet specifiek als techniek genoemd in de tekst, maar

werden door de onderzoekers geïdentificeerd in de artikelen. Dat kan betekenen dat de

gedragsveranderingstechnieken niet bewust werden ingezet. Er blijkt dus nog verbetering nodig van

leefstijlinterventies, evenals verder onderzoek naar leefstijlverbetering en het gebruik van

gedragsveranderingstechnieken bij mensen met een verstandelijke beperking. De kwaliteit van veel onderzoeken

138541-Willems_BNW.indd 163 31-10-19 10:08

164

kan nog verbeteren door gebruik te maken van een theoretisch kader en informatie duidelijker te beschrijven in

de artikelen.

3 | Gedragsveranderingstechnieken voor mensen met een lichte verstandelijke

beperking

De geschiktheid van gedragsveranderingstechnieken voor leefstijlgedrag van mensen met een lichte

verstandelijke beperking volgens professionals, wordt beschreven in hoofdstuk 4. Er is een Delphi onderzoek

uitgevoerd. Hierbij is in twee rondes aan professionals in de verstandelijk gehandicaptenzorg gevraagd welke

gedragsveranderingstechnieken zij geschikt vinden om leefstijlgedrag bij mensen met een lichte verstandelijke

beperking te veranderen. Deelnemers waren onderverdeeld in vier groepen, namelijk begeleiders,

gedragswetenschappers, paramedici en artsen verstandelijk gehandicapten (AVG). Er werd weer gebruik

gemaakt van de lijst met gedragsveranderingstechnieken die ook in hoofdstuk 3 is gebruikt, de CALO-RE

taxonomie. In de eerste Delphi ronde werden alle technieken van de CALO-RE taxonomie aan de professionals

voorgelegd in een online vragenlijst. Ze konden aangeven of ze iedere techniek geschikt of ongeschikt vonden.

Vervolgens werd de mate van overeenstemming bepaald voor iedere techniek, bij iedere groep van

professionals. In Delphi ronde 2 werden de technieken waarvoor geen consensus was gevonden opnieuw

voorgelegd aan de deelnemers via de online vragenlijst.

Na de twee Delphirondes waren de deelnemers het met elkaar eens over 25 gedragsveranderingstechnieken. Ze

vonden 24 technieken geschikt en 1 techniek ongeschikt, namelijk: ‘je stimuleert de cliënt om na te denken over

hoe hij zich zou voelen als hij het beoogde leefstijlgedrag niet zou doen. En of hij daar spijt van zou krijgen’. De

technieken waarover de meeste consensus was, waren:

- Je denkt met de cliënt na over mogelijke problemen en oplossingen voor leefstijlgedrag;

- Je moedigt de cliënt aan om deeltaken (voor leefstijlgedrag) te bedenken;

- Je beloont de cliënt voor vooruitgang richting het doel;

- Een coach helpt de cliënt met behulp van motiverende gespreksvoering. Hierbij gaat het om een

specifieke methode. De coach gaat met de cliënt in gesprek over het leefstijlgedrag van de cliënt en

helpt hem om na te denken over wat hij wil of belangrijk vindt;

- Je moedigt de cliënt aan om leefstijlgedrag te plannen.

Er wordt geconcludeerd dat de geschikte technieken kunnen worden gebruikt in de ondersteuning van mensen

met een lichte verstandelijke beperking voor het veranderen van hun leefstijlgedrag.

In hoofdstuk 5 worden praktijk observaties beschreven bij begeleiders van mensen met een lichte verstandelijke

beperking om te bepalen of gedragsveranderingstechnieken door hen worden gebruikt als ze hun cliënt

ondersteunen bij gezond leven. Stagiaires filmden begeleiders met videocamera’s tijdens hun werk, samen met

de cliënten die hiervoor toestemming gaven. Begeleiders van verschillende zorgorganisaties in Nederland

hebben meegedaan. Ze werden drie keer gefilmd, op drie verschillende dagen. De videobeelden zijn

geanalyseerd en daarbij is gelet op het gebruik van gedragsveranderingstechnieken. Er werd ook hier weer

165

gebruik gemaakt van de lijst van gedragsveranderingstechnieken, de CALO-RE taxonomie.

Er hebben 14 begeleiders meegedaan aan het onderzoek. Niet alle begeleiders zijn 3 keer gefilmd. Uit de

observaties bleek dat 21 verschillende gedragsveranderingstechnieken werden gebruikt. De meest gebruikte

technieken waren:

- Je vertelt de cliënt wat anderen van het leefstijlgedrag vinden (bijvoorbeeld: wat de begeleider van het

leefstijlgedrag vindt);

- Je helpt de cliënt om zichzelf als rolmodel te zien (bijvoorbeeld doordat de begeleider aan de cliënt

vraagt hoe iets moet: hij/zij is de ‘expert’);

- Je beloont de cliënt voor de uitvoering van het leefstijlgedrag (bijvoorbeeld doordat de begeleider

complimenten geeft);

- Je moedigt de cliënt aan om doelen (over leefstijlgedrag) te evalueren (bijvoorbeeld doordat de

begeleider de cliënt vraagt of het lukt en hoe het gaat met de uitvoering van het gedrag);

- Je legt de cliënt uit hoe hij het leefstijlgedrag moet uitvoeren.

Er wordt geconcludeerd dat begeleiders gebruik maken van gedragsveranderingstechnieken om leefstijlgedrag

bij mensen met een lichte verstandelijke beperking te veranderen. Dit zijn andere technieken dan de meest

geschikte technieken, die uit het eerdere onderzoek (hoofdstuk 4) naar voren kwamen.

Uit hoofdstuk 4 en 5 is gebleken dat begeleiders mogelijk beter andere technieken in kunnen zetten om het

leefstijlgedrag van hun cliënten te ondersteunen. Hoofdstuk 6 bespreekt de ontwikkeling en pilot-test van een

training in het gebruiken van de gedragsveranderingstechniek ‘het plannen van leefstijlgedrag’. Een team van 11

begeleiders heeft deelgenomen aan deze leefstijltraining. De training bestond uit twee bijeenkomsten en richtte

zich op het plannen van leefstijlgedrag. De training is ontwikkeld in samenwerking met leefstijlonderzoekers, een

onderwijsspecialist en een begeleider. Er werd gebruik gemaakt van een casusbespreking, theorie (met behulp

van video’s en brainstorm), rollenspelen en reflectie, volgens de methode van Probleem Gestuurd Onderwijs

(PGO). De begeleiders vulden vragenlijsten in voorafgaand aan het eerste trainingsmoment, tussen de twee

trainingsmomenten en na afronding van de training. Er werd gekeken of begeleiders zich meer competent

voelden om leefstijlgedrag te plannen en of ze bereid waren om dit (vaker) te doen. Daarnaast werd aan

begeleiders gevraagd welke factoren hen hielpen of belemmerden om leefstijlgedrag te plannen met hun

cliënten. Ook werd de training geëvalueerd. De begeleiders waren tevreden over de inhoud en uitvoering van de

training in zijn geheel en ook over de twee trainingsmomenten op zichzelf. Na afloop van de training vonden de

begeleiders dat ze duidelijk meer vaardigheden hadden om leefstijlgedrag te plannen met hun cliënten. Ook

waren ze meer bereid dan voor de training om leefstijlgedrag te gaan plannen. Er werden verschillende factoren

genoemd die hen hielpen of belemmerden om leefstijlgedrag te plannen. Factoren die te maken hadden met het

hebben van gelegenheid zoals voldoende tijd en middelen werden het meest genoemd.

4 | Conclusie

Dit proefschrift laat zien dat de huidige leefstijlinterventies nog niet (voldoende) effectief zijn om het

leefstijlgedrag van mensen met een VB te verbeteren. De gedragsveranderingstechnieken die in deze

138541-Willems_BNW.indd 164 31-10-19 10:08

164

kan nog verbeteren door gebruik te maken van een theoretisch kader en informatie duidelijker te beschrijven in

de artikelen.

3 | Gedragsveranderingstechnieken voor mensen met een lichte verstandelijke

beperking

De geschiktheid van gedragsveranderingstechnieken voor leefstijlgedrag van mensen met een lichte

verstandelijke beperking volgens professionals, wordt beschreven in hoofdstuk 4. Er is een Delphi onderzoek

uitgevoerd. Hierbij is in twee rondes aan professionals in de verstandelijk gehandicaptenzorg gevraagd welke

gedragsveranderingstechnieken zij geschikt vinden om leefstijlgedrag bij mensen met een lichte verstandelijke

beperking te veranderen. Deelnemers waren onderverdeeld in vier groepen, namelijk begeleiders,

gedragswetenschappers, paramedici en artsen verstandelijk gehandicapten (AVG). Er werd weer gebruik

gemaakt van de lijst met gedragsveranderingstechnieken die ook in hoofdstuk 3 is gebruikt, de CALO-RE

taxonomie. In de eerste Delphi ronde werden alle technieken van de CALO-RE taxonomie aan de professionals

voorgelegd in een online vragenlijst. Ze konden aangeven of ze iedere techniek geschikt of ongeschikt vonden.

Vervolgens werd de mate van overeenstemming bepaald voor iedere techniek, bij iedere groep van

professionals. In Delphi ronde 2 werden de technieken waarvoor geen consensus was gevonden opnieuw

voorgelegd aan de deelnemers via de online vragenlijst.

Na de twee Delphirondes waren de deelnemers het met elkaar eens over 25 gedragsveranderingstechnieken. Ze

vonden 24 technieken geschikt en 1 techniek ongeschikt, namelijk: ‘je stimuleert de cliënt om na te denken over

hoe hij zich zou voelen als hij het beoogde leefstijlgedrag niet zou doen. En of hij daar spijt van zou krijgen’. De

technieken waarover de meeste consensus was, waren:

- Je denkt met de cliënt na over mogelijke problemen en oplossingen voor leefstijlgedrag;

- Je moedigt de cliënt aan om deeltaken (voor leefstijlgedrag) te bedenken;

- Je beloont de cliënt voor vooruitgang richting het doel;

- Een coach helpt de cliënt met behulp van motiverende gespreksvoering. Hierbij gaat het om een

specifieke methode. De coach gaat met de cliënt in gesprek over het leefstijlgedrag van de cliënt en

helpt hem om na te denken over wat hij wil of belangrijk vindt;

- Je moedigt de cliënt aan om leefstijlgedrag te plannen.

Er wordt geconcludeerd dat de geschikte technieken kunnen worden gebruikt in de ondersteuning van mensen

met een lichte verstandelijke beperking voor het veranderen van hun leefstijlgedrag.

In hoofdstuk 5 worden praktijk observaties beschreven bij begeleiders van mensen met een lichte verstandelijke

beperking om te bepalen of gedragsveranderingstechnieken door hen worden gebruikt als ze hun cliënt

ondersteunen bij gezond leven. Stagiaires filmden begeleiders met videocamera’s tijdens hun werk, samen met

de cliënten die hiervoor toestemming gaven. Begeleiders van verschillende zorgorganisaties in Nederland

hebben meegedaan. Ze werden drie keer gefilmd, op drie verschillende dagen. De videobeelden zijn

geanalyseerd en daarbij is gelet op het gebruik van gedragsveranderingstechnieken. Er werd ook hier weer

165

gebruik gemaakt van de lijst van gedragsveranderingstechnieken, de CALO-RE taxonomie.

Er hebben 14 begeleiders meegedaan aan het onderzoek. Niet alle begeleiders zijn 3 keer gefilmd. Uit de

observaties bleek dat 21 verschillende gedragsveranderingstechnieken werden gebruikt. De meest gebruikte

technieken waren:

- Je vertelt de cliënt wat anderen van het leefstijlgedrag vinden (bijvoorbeeld: wat de begeleider van het

leefstijlgedrag vindt);

- Je helpt de cliënt om zichzelf als rolmodel te zien (bijvoorbeeld doordat de begeleider aan de cliënt

vraagt hoe iets moet: hij/zij is de ‘expert’);

- Je beloont de cliënt voor de uitvoering van het leefstijlgedrag (bijvoorbeeld doordat de begeleider

complimenten geeft);

- Je moedigt de cliënt aan om doelen (over leefstijlgedrag) te evalueren (bijvoorbeeld doordat de

begeleider de cliënt vraagt of het lukt en hoe het gaat met de uitvoering van het gedrag);

- Je legt de cliënt uit hoe hij het leefstijlgedrag moet uitvoeren.

Er wordt geconcludeerd dat begeleiders gebruik maken van gedragsveranderingstechnieken om leefstijlgedrag

bij mensen met een lichte verstandelijke beperking te veranderen. Dit zijn andere technieken dan de meest

geschikte technieken, die uit het eerdere onderzoek (hoofdstuk 4) naar voren kwamen.

Uit hoofdstuk 4 en 5 is gebleken dat begeleiders mogelijk beter andere technieken in kunnen zetten om het

leefstijlgedrag van hun cliënten te ondersteunen. Hoofdstuk 6 bespreekt de ontwikkeling en pilot-test van een

training in het gebruiken van de gedragsveranderingstechniek ‘het plannen van leefstijlgedrag’. Een team van 11

begeleiders heeft deelgenomen aan deze leefstijltraining. De training bestond uit twee bijeenkomsten en richtte

zich op het plannen van leefstijlgedrag. De training is ontwikkeld in samenwerking met leefstijlonderzoekers, een

onderwijsspecialist en een begeleider. Er werd gebruik gemaakt van een casusbespreking, theorie (met behulp

van video’s en brainstorm), rollenspelen en reflectie, volgens de methode van Probleem Gestuurd Onderwijs

(PGO). De begeleiders vulden vragenlijsten in voorafgaand aan het eerste trainingsmoment, tussen de twee

trainingsmomenten en na afronding van de training. Er werd gekeken of begeleiders zich meer competent

voelden om leefstijlgedrag te plannen en of ze bereid waren om dit (vaker) te doen. Daarnaast werd aan

begeleiders gevraagd welke factoren hen hielpen of belemmerden om leefstijlgedrag te plannen met hun

cliënten. Ook werd de training geëvalueerd. De begeleiders waren tevreden over de inhoud en uitvoering van de

training in zijn geheel en ook over de twee trainingsmomenten op zichzelf. Na afloop van de training vonden de

begeleiders dat ze duidelijk meer vaardigheden hadden om leefstijlgedrag te plannen met hun cliënten. Ook

waren ze meer bereid dan voor de training om leefstijlgedrag te gaan plannen. Er werden verschillende factoren

genoemd die hen hielpen of belemmerden om leefstijlgedrag te plannen. Factoren die te maken hadden met het

hebben van gelegenheid zoals voldoende tijd en middelen werden het meest genoemd.

4 | Conclusie

Dit proefschrift laat zien dat de huidige leefstijlinterventies nog niet (voldoende) effectief zijn om het

leefstijlgedrag van mensen met een VB te verbeteren. De gedragsveranderingstechnieken die in deze

138541-Willems_BNW.indd 165 31-10-19 10:08

166

interventies worden gebruikt, worden veelal niet bewust ingezet. In de praktijk gebruiken begeleiders

gedragsveranderingstechnieken, maar nog lang niet altijd de meest veelbelovende. Training lijkt echter uitkomst

te bieden om begeleiders te ondersteunen bij het inzetten van gedragsveranderingstechnieken. Verdere

ontwikkeling van effectieve en passende trainingen is nodig om begeleiders bekwaam te maken in het

veranderen van leefstijlgedrag van mensen met een lichte verstandelijke beperking.

138541-Willems_BNW.indd 166 31-10-19 10:08

166

interventies worden gebruikt, worden veelal niet bewust ingezet. In de praktijk gebruiken begeleiders

gedragsveranderingstechnieken, maar nog lang niet altijd de meest veelbelovende. Training lijkt echter uitkomst

te bieden om begeleiders te ondersteunen bij het inzetten van gedragsveranderingstechnieken. Verdere

ontwikkeling van effectieve en passende trainingen is nodig om begeleiders bekwaam te maken in het

veranderen van leefstijlgedrag van mensen met een lichte verstandelijke beperking.

138541-Willems_BNW.indd 167 31-10-19 10:08

168

Dankwoord

Promoveren was niet iets wat ik voor mezelf in gedachten had. En toch is er nu dit proefschrift met mijn naam

erop. Een mooie kans, een interessante uitdaging was voor mij het promotie-traject toen ik hier vier jaar geleden

mee startte. En ik had het beslist niet willen missen! Daarom wil ik graag iedereen bedanken die me heeft

geholpen, gesteund en vertrouwd om dit onderzoek te kunnen uitvoeren.

Een groot aantal zorgorganisaties in Noord-Nederland zag het belang van een gezonde leefstijl voor mensen met

een verstandelijke beperking: De Trans, De Zijlen, Stichting Sprank, ’s Heerenloo Zorggroep, Talant, Cosis,

Koninklijke Visio Noord Nederland, Philadelphia en Vanboeijen. Ik wil jullie bedanken voor de mogelijkheid om

dit promotie-traject uit te voeren, het inhoudelijk meedenken met de onderzoeksvragen en de ondersteuning in

de praktische zin, onder andere door medewerkers van de organisaties die deelnamen aan het onderzoek.

De begeleiders en hun cliënten, gedragswetenschappers, paramedici en artsen verstandelijk gehandicapten

(AVG’s) wil ik heel hartelijk bedanken voor hun deelname aan dit onderzoek. Jullie tijdsinvestering, meedenken

en hun openheid waren onmisbaar om inhoud te geven aan dit proefschrift. Ook de wettelijk vertegenwoordigers

van mensen met een verstandelijke beperking wil ik bedanken voor het gestelde vertrouwen en toestemming

zodat de persoon die zij vertegenwoordigen kon deelnemen aan het onderzoek.

Beste Cees, jij was mijn ‘hoofdbegeleider’ en dat deed je op een fijne manier! Door jouw overstijgende kijk, werd

ik telkens teruggeroepen naar de hoofdlijnen en verloor ik me niet in details. Je praktische manier van denken

was geregeld een verademing, evenals je toegankelijke manier van doen: je stimuleerde juist om gebruik te

maken van de expertise van het begeleidingsteam waar ik dat nodig had. Jouw kennis over wetenschappelijk

onderzoek, gezondheid en het promotie-traject op zichzelf hebben me enorm geholpen om dit traject tot een

succes te maken!

Beste Aly, wat heb ik het getroffen met jou als mijn dagelijks begeleider! Je was altijd betrokken, hielp mee bij

het bepalen van de goede richting en wist altijd positieve woorden aan te vinden die me hielpen om weer verder

te gaan. Je maakte vaak direct tijd vrij om mee te denken wanneer dat nodig was en had een luisterend oor. Je

was bereid om met ieder stuk opnieuw mee te kijken en mede door jouw snelle reageren is het gelukt om dit

proefschrift in vier jaar af te ronden. Dankjewel voor je hulp tijdens mijn zwangerschapsverlof en je presentaties

over mijn onderzoek tijdens congressen. Je enthousiasme voor mensen met een verstandelijke beperking en hun

gezondheid werkten aanstekelijk en inspirerend. Dankjewel voor alles!

Beste Johan, je was tijdens mijn promotie traject wat meer vanaf een afstand betrokken en dat maakte dat je

dingen meer vanuit overstijgend perspectief bekeek. Dit hielp me om de grote lijn vast te houden, heel

waardevol! Ook hielpen jouw opmerkingen om soms vanuit een andere invalshoek naar het onderwerp te kijken

en te bezinnen op de gekozen richting. Jouw enthousiasme voor gezondheid en bewegen en hun theoretische

onderbouwing zorgden geregeld voor duidelijke verbeteringen van dit proefschrift, bedankt!

169

Beste Thessa, jij bent wat later een van mijn officiële co-promotores geworden, maar al in het begin van mijn

promotie-traject maakten we kennis vanwege onze samenwerking bij de systematische review. Ik ben heel blij

met jouw betrokkenheid bij mijn promotietraject! Je nuchtere kijk, heldere schrijfstijl en expertise in onderzoek

bij mensen met een verstandelijke beperking hielpen me om koers en focus te houden, inhoudelijk de diepte te

zoeken en uitgevoerde onderzoeken goed op papier te krijgen. Ook voor je fijne manier van communiceren en

omgaan met elkaar wil ik je bedanken!

Beste Ruud, jij was niet officieel betrokken bij mijn promotie-traject, maar had er beslist een belangrijke rol in!

Dankjewel voor je aanwezigheid bij vele overleggen, je expertise op het gebied van onderzoek en mensen met

een verstandelijke beperking en je feedback op geschreven stukken. Je inbreng heeft het proefschrift naar een

hoger niveau getild!

Naast mijn begeleiders hebben ook anderen meegeschreven en meegeholpen met de artikelen uit dit

proefschrift. Craig Melville, thank you for your guidance and patience with me, especially during our

collaboration for the systematic review. I was just starting as a PhD candidate and you approached me like a full

researcher, taking my reasoning’s seriously and answering to simple questions. Thank you for your work on the

meta-analyses as well! Else Havik, dankjewel voor al jouw werk voor de systematische review: het opzetten van

de methode en het screenen van alle artikelen. Zonder jouw inzet en hulp was de review minder snel afgerond

en minder goed geweest! Pepijn van Empelen, dankjewel voor het meeschrijven aan de meta-analyse! Wim

Krijnen, dankjewel voor al je hulp met statische vraagstukken. Je maakte tijd vrij om mee te denken over de opzet

van (statistische) methodes, beantwoordde geduldig allerlei basisvragen over statistiek en gaf waardevolle

feedback op geschreven stukken. Wichor Bramer, dankjewel voor je hulp bij de zoekstring en uitvoeren van de

zoekopdracht in de verschillende databases.

Prof. Dr. Annette van der Putten, Prof. Dr. Mariët Hagedoorn en Prof. Dr. Geraline Leusink, heel hartelijk bedankt

dat jullie wilden deelnemen aan de beoordelingscommissie. Ik hoop dat mijn proefschrift interessant was om te

lezen tijdens de zomervakantie.

Beste Rianne en Annelies, het was fijn om met jullie als collega’s op te trekken. We hebben samen de leuke en

lastige momenten kunnen delen en dat luchtte soms echt even op! Ook hielp het om met elkaar te delen waar

we mee bezig waren en samen na te denken over de volgende stap(pen). Ook de presentaties die we samen

hebben gegeven tijdens de Workshops voor de IWP-VB, de netwerkbijeenkomst Uniek Sporten en de overleggen

vanuit de IWP-VB en ‘De krachten gebundeld’ waren gewoon leuker omdat we ze samen deden! Dank jullie wel

voor de gezellige tijd, samen met Kristel, tijdens het IASSID congres in Belfast. Ik wens jullie veel succes bij de

afronding van jullie promotie-traject, dat gaat helemaal goed komen! Dinette en Annemarie, bedankt voor alle

gezelligheid en het delen van jullie ervaringen en tips met de afronding van het proefschrift en de voorbereiding

van de promotieplechtigheid!

Ook de collega’s van het lectoraat Healthy Ageing, Allied Health Care and Nursing wil ik bedanken. De

onderwerpen van onze onderzoeken verschilden soms behoorlijk, maar het plezier, de dilemma’s en de

138541-Willems_BNW.indd 168 31-10-19 10:08

168

Dankwoord

Promoveren was niet iets wat ik voor mezelf in gedachten had. En toch is er nu dit proefschrift met mijn naam

erop. Een mooie kans, een interessante uitdaging was voor mij het promotie-traject toen ik hier vier jaar geleden

mee startte. En ik had het beslist niet willen missen! Daarom wil ik graag iedereen bedanken die me heeft

geholpen, gesteund en vertrouwd om dit onderzoek te kunnen uitvoeren.

Een groot aantal zorgorganisaties in Noord-Nederland zag het belang van een gezonde leefstijl voor mensen met

een verstandelijke beperking: De Trans, De Zijlen, Stichting Sprank, ’s Heerenloo Zorggroep, Talant, Cosis,

Koninklijke Visio Noord Nederland, Philadelphia en Vanboeijen. Ik wil jullie bedanken voor de mogelijkheid om

dit promotie-traject uit te voeren, het inhoudelijk meedenken met de onderzoeksvragen en de ondersteuning in

de praktische zin, onder andere door medewerkers van de organisaties die deelnamen aan het onderzoek.

De begeleiders en hun cliënten, gedragswetenschappers, paramedici en artsen verstandelijk gehandicapten

(AVG’s) wil ik heel hartelijk bedanken voor hun deelname aan dit onderzoek. Jullie tijdsinvestering, meedenken

en hun openheid waren onmisbaar om inhoud te geven aan dit proefschrift. Ook de wettelijk vertegenwoordigers

van mensen met een verstandelijke beperking wil ik bedanken voor het gestelde vertrouwen en toestemming

zodat de persoon die zij vertegenwoordigen kon deelnemen aan het onderzoek.

Beste Cees, jij was mijn ‘hoofdbegeleider’ en dat deed je op een fijne manier! Door jouw overstijgende kijk, werd

ik telkens teruggeroepen naar de hoofdlijnen en verloor ik me niet in details. Je praktische manier van denken

was geregeld een verademing, evenals je toegankelijke manier van doen: je stimuleerde juist om gebruik te

maken van de expertise van het begeleidingsteam waar ik dat nodig had. Jouw kennis over wetenschappelijk

onderzoek, gezondheid en het promotie-traject op zichzelf hebben me enorm geholpen om dit traject tot een

succes te maken!

Beste Aly, wat heb ik het getroffen met jou als mijn dagelijks begeleider! Je was altijd betrokken, hielp mee bij

het bepalen van de goede richting en wist altijd positieve woorden aan te vinden die me hielpen om weer verder

te gaan. Je maakte vaak direct tijd vrij om mee te denken wanneer dat nodig was en had een luisterend oor. Je

was bereid om met ieder stuk opnieuw mee te kijken en mede door jouw snelle reageren is het gelukt om dit

proefschrift in vier jaar af te ronden. Dankjewel voor je hulp tijdens mijn zwangerschapsverlof en je presentaties

over mijn onderzoek tijdens congressen. Je enthousiasme voor mensen met een verstandelijke beperking en hun

gezondheid werkten aanstekelijk en inspirerend. Dankjewel voor alles!

Beste Johan, je was tijdens mijn promotie traject wat meer vanaf een afstand betrokken en dat maakte dat je

dingen meer vanuit overstijgend perspectief bekeek. Dit hielp me om de grote lijn vast te houden, heel

waardevol! Ook hielpen jouw opmerkingen om soms vanuit een andere invalshoek naar het onderwerp te kijken

en te bezinnen op de gekozen richting. Jouw enthousiasme voor gezondheid en bewegen en hun theoretische

onderbouwing zorgden geregeld voor duidelijke verbeteringen van dit proefschrift, bedankt!

169

Beste Thessa, jij bent wat later een van mijn officiële co-promotores geworden, maar al in het begin van mijn

promotie-traject maakten we kennis vanwege onze samenwerking bij de systematische review. Ik ben heel blij

met jouw betrokkenheid bij mijn promotietraject! Je nuchtere kijk, heldere schrijfstijl en expertise in onderzoek

bij mensen met een verstandelijke beperking hielpen me om koers en focus te houden, inhoudelijk de diepte te

zoeken en uitgevoerde onderzoeken goed op papier te krijgen. Ook voor je fijne manier van communiceren en

omgaan met elkaar wil ik je bedanken!

Beste Ruud, jij was niet officieel betrokken bij mijn promotie-traject, maar had er beslist een belangrijke rol in!

Dankjewel voor je aanwezigheid bij vele overleggen, je expertise op het gebied van onderzoek en mensen met

een verstandelijke beperking en je feedback op geschreven stukken. Je inbreng heeft het proefschrift naar een

hoger niveau getild!

Naast mijn begeleiders hebben ook anderen meegeschreven en meegeholpen met de artikelen uit dit

proefschrift. Craig Melville, thank you for your guidance and patience with me, especially during our

collaboration for the systematic review. I was just starting as a PhD candidate and you approached me like a full

researcher, taking my reasoning’s seriously and answering to simple questions. Thank you for your work on the

meta-analyses as well! Else Havik, dankjewel voor al jouw werk voor de systematische review: het opzetten van

de methode en het screenen van alle artikelen. Zonder jouw inzet en hulp was de review minder snel afgerond

en minder goed geweest! Pepijn van Empelen, dankjewel voor het meeschrijven aan de meta-analyse! Wim

Krijnen, dankjewel voor al je hulp met statische vraagstukken. Je maakte tijd vrij om mee te denken over de opzet

van (statistische) methodes, beantwoordde geduldig allerlei basisvragen over statistiek en gaf waardevolle

feedback op geschreven stukken. Wichor Bramer, dankjewel voor je hulp bij de zoekstring en uitvoeren van de

zoekopdracht in de verschillende databases.

Prof. Dr. Annette van der Putten, Prof. Dr. Mariët Hagedoorn en Prof. Dr. Geraline Leusink, heel hartelijk bedankt

dat jullie wilden deelnemen aan de beoordelingscommissie. Ik hoop dat mijn proefschrift interessant was om te

lezen tijdens de zomervakantie.

Beste Rianne en Annelies, het was fijn om met jullie als collega’s op te trekken. We hebben samen de leuke en

lastige momenten kunnen delen en dat luchtte soms echt even op! Ook hielp het om met elkaar te delen waar

we mee bezig waren en samen na te denken over de volgende stap(pen). Ook de presentaties die we samen

hebben gegeven tijdens de Workshops voor de IWP-VB, de netwerkbijeenkomst Uniek Sporten en de overleggen

vanuit de IWP-VB en ‘De krachten gebundeld’ waren gewoon leuker omdat we ze samen deden! Dank jullie wel

voor de gezellige tijd, samen met Kristel, tijdens het IASSID congres in Belfast. Ik wens jullie veel succes bij de

afronding van jullie promotie-traject, dat gaat helemaal goed komen! Dinette en Annemarie, bedankt voor alle

gezelligheid en het delen van jullie ervaringen en tips met de afronding van het proefschrift en de voorbereiding

van de promotieplechtigheid!

Ook de collega’s van het lectoraat Healthy Ageing, Allied Health Care and Nursing wil ik bedanken. De

onderwerpen van onze onderzoeken verschilden soms behoorlijk, maar het plezier, de dilemma’s en de

138541-Willems_BNW.indd 169 31-10-19 10:08

170

investering zijn vaak een feest van herkenning. Trudy, Ineke en Hillie, het was heel fijn dat ik altijd bij jullie kon

aankloppen voor alle praktische zaken, bedankt!

Onderzoek naar leefstijl bij mensen met een verstandelijke beperking wordt door het hele land gedaan, gelukkig!

De (half)jaarlijkse bijeenkomsten met collega-onderzoekers waren leerzaam, gezellig en fijne momenten om te

sparren over de inhoud van ons onderzoek en gebruikte methodes, evenals het uitwisselingen van ervaringen

met promoveren. Bedankt!

Manouk en Mirjam, bedankt voor jullie hulp bij de uitvoering van dit onderzoek. Manouk, jij hebt me echt

geholpen door tijdens mijn zwangerschapsverlof de coördinatie van de observatiestudie met Aly op je te nemen,

bedankt! Mirjam, jij hebt de codering van alle video-bestanden grotendeels uitgevoerd, een grote klus die je

nauwkeurig en in korte tijd hebt weten uit te voeren, dankjewel!

Naast mijn collega’s bij de Hanzehogeschool had ik het voorrecht dat ik ook collega’s had binnen Stichting Sprank.

Stichting Sprank wil ik bedanken voor de mogelijkheid om dit promotieonderzoek uit te voeren en voor het

gestelde vertrouwen. Lieve (oud)collega-gedragsdeskundigen; Annemarieke, Christien, Lara, Liesbeth, Petra,

Riëtte en Ab, dankjewel voor jullie interesse, steun en fijne samenwerking! Lieve Tineke, jij was een van mijn

begeleiders toen ik net startte bij Stichting Sprank en maakte me wegwijs in de zorg voor mensen met een

verstandelijke beperking. Dankjewel voor het delen van jouw kennis en kunde en je hulp, vertrouwen en

interesse! Lieve Rineke, ook jij hielp me bij mijn start in de VG-sector. Door jouw vertrouwen in mijn kunnen

groeide mijn zelfvertrouwen. Je stimuleerde me om door te zetten, verder te kijken. Ik heb veel geleerd van je

expertise van en zorg voor mensen met een verstandelijke beperking. Ook onze gesprekken over geloof en leven

als christen zijn me heel waardevol. Dankjewel!

Lieve papa en mama, dankjewel voor wie jullie voor me zijn en zijn geweest. Jullie vertrouwen in mij gaf me

zelfvertrouwen en hielp me door te zetten. Het was fijn om met jullie te kunnen praten over dingen waar ik

tegenaan liep of blij van werd, ook al waren jullie zelf niet zo bekend met wetenschappelijk onderzoek. Jullie zijn

een voorbeeld voor me en ik hou heel veel van jullie!

Lieve schoonouders, wat is jullie huis een thuis voor mij geworden. Bedankt voor jullie liefde, interesse en alle

hulp: soms werd er even in huis gepoetst of pasten jullie een keer extra op Jade. Ik heb het enorm getroffen met

jullie en hou veel van jullie!

Lieve Wim, Els, Ilse, Dorienke, lieve zwagers en schoonzussen: familie is familie voor altijd. Jullie

onvoorwaardelijke liefde en steun zijn voor mij een belangrijke basis om te leven en werken. Het is een zegen

om deel uit te maken van zulke liefdevolle en gezellige gezinnen! Lieve Ils, dankjewel dat jij mijn paranimf wilt

zijn, dat betekent veel voor me. Ik hou van jullie, dank jullie wel voor alles!

Lieve vrienden, jullie zijn met velen en wat is dat een zegen! Ontspanning, afleiding, humor en leuke dingen doen

evenals een luisterend oor: ik had er niet zonder gekund. Dank jullie wel voor alle mooie dingen die we samen al

hebben beleefd, ik hoop nog heel lang deel uit te mogen maken van jullie levens! Lieve Elsemiek en Marcia, jullie

171

zijn mijn oudste vriendinnetjes en wat hebben we het goed samen. Het is fijn om elkaar zo goed te kennen,

samen tijd door te brengen en met elkaar mee te leven in mooie en moeilijke momenten. Ik hou van jullie!

Lieve Ger, het mooiste voor het laatst bewaren.. Dat is waarom je pas hier wordt genoemd in het dankwoord. Jij

bent al zo lang mijn maatje en geliefde en nog steeds hebben we het zo goed samen! Je liefde, steun, vertrouwen,

geduld, toewijding en geloof zijn mijn vaste basis. Je was er altijd voor me, had een luisterend oor, gaf me de

ruimte om extra te werken wanneer dat nodig was (Mar, het is geen typemachine..), had geduld als ik even niet

zo gezellig was en wist me op te fleuren met gezelligheid, humor en een kop thee. Het is niet voor niets dat jij

mijn paranimf bent. Je bent zo vertrouwd voor me en ik ben stapelgek op je! Wat is het heerlijk dat we samen

een prachtige dochter mochten krijgen. Jade is ons wondertje en geeft ons zoveel plezier en levensinhoud. En

nu verwachten we nog een (a)pril wondertje, wat een mooi vooruitzicht! Ik bid dat onze levens voor altijd aan

elkaar verbonden blijven en we samen nog heel veel mooie momenten mogen beleven. Dankjewel voor wie je

bent!

‘Laat ieder van u de gaven die hij van God heeft gekregen, gebruiken om anderen daarmee te helpen’ (1 Petrus

4:10a). De vaardigheden die ik nodig had om dit proefschrift te schrijven, heb ik mezelf niet gegeven. Ik dank

Hem die mij heeft gemaakt voor Zijn liefde voor ons allemaal! Prijs de Heer!

138541-Willems_BNW.indd 170 31-10-19 10:08

170

investering zijn vaak een feest van herkenning. Trudy, Ineke en Hillie, het was heel fijn dat ik altijd bij jullie kon

aankloppen voor alle praktische zaken, bedankt!

Onderzoek naar leefstijl bij mensen met een verstandelijke beperking wordt door het hele land gedaan, gelukkig!

De (half)jaarlijkse bijeenkomsten met collega-onderzoekers waren leerzaam, gezellig en fijne momenten om te

sparren over de inhoud van ons onderzoek en gebruikte methodes, evenals het uitwisselingen van ervaringen

met promoveren. Bedankt!

Manouk en Mirjam, bedankt voor jullie hulp bij de uitvoering van dit onderzoek. Manouk, jij hebt me echt

geholpen door tijdens mijn zwangerschapsverlof de coördinatie van de observatiestudie met Aly op je te nemen,

bedankt! Mirjam, jij hebt de codering van alle video-bestanden grotendeels uitgevoerd, een grote klus die je

nauwkeurig en in korte tijd hebt weten uit te voeren, dankjewel!

Naast mijn collega’s bij de Hanzehogeschool had ik het voorrecht dat ik ook collega’s had binnen Stichting Sprank.

Stichting Sprank wil ik bedanken voor de mogelijkheid om dit promotieonderzoek uit te voeren en voor het

gestelde vertrouwen. Lieve (oud)collega-gedragsdeskundigen; Annemarieke, Christien, Lara, Liesbeth, Petra,

Riëtte en Ab, dankjewel voor jullie interesse, steun en fijne samenwerking! Lieve Tineke, jij was een van mijn

begeleiders toen ik net startte bij Stichting Sprank en maakte me wegwijs in de zorg voor mensen met een

verstandelijke beperking. Dankjewel voor het delen van jouw kennis en kunde en je hulp, vertrouwen en

interesse! Lieve Rineke, ook jij hielp me bij mijn start in de VG-sector. Door jouw vertrouwen in mijn kunnen

groeide mijn zelfvertrouwen. Je stimuleerde me om door te zetten, verder te kijken. Ik heb veel geleerd van je

expertise van en zorg voor mensen met een verstandelijke beperking. Ook onze gesprekken over geloof en leven

als christen zijn me heel waardevol. Dankjewel!

Lieve papa en mama, dankjewel voor wie jullie voor me zijn en zijn geweest. Jullie vertrouwen in mij gaf me

zelfvertrouwen en hielp me door te zetten. Het was fijn om met jullie te kunnen praten over dingen waar ik

tegenaan liep of blij van werd, ook al waren jullie zelf niet zo bekend met wetenschappelijk onderzoek. Jullie zijn

een voorbeeld voor me en ik hou heel veel van jullie!

Lieve schoonouders, wat is jullie huis een thuis voor mij geworden. Bedankt voor jullie liefde, interesse en alle

hulp: soms werd er even in huis gepoetst of pasten jullie een keer extra op Jade. Ik heb het enorm getroffen met

jullie en hou veel van jullie!

Lieve Wim, Els, Ilse, Dorienke, lieve zwagers en schoonzussen: familie is familie voor altijd. Jullie

onvoorwaardelijke liefde en steun zijn voor mij een belangrijke basis om te leven en werken. Het is een zegen

om deel uit te maken van zulke liefdevolle en gezellige gezinnen! Lieve Ils, dankjewel dat jij mijn paranimf wilt

zijn, dat betekent veel voor me. Ik hou van jullie, dank jullie wel voor alles!

Lieve vrienden, jullie zijn met velen en wat is dat een zegen! Ontspanning, afleiding, humor en leuke dingen doen

evenals een luisterend oor: ik had er niet zonder gekund. Dank jullie wel voor alle mooie dingen die we samen al

hebben beleefd, ik hoop nog heel lang deel uit te mogen maken van jullie levens! Lieve Elsemiek en Marcia, jullie

171

zijn mijn oudste vriendinnetjes en wat hebben we het goed samen. Het is fijn om elkaar zo goed te kennen,

samen tijd door te brengen en met elkaar mee te leven in mooie en moeilijke momenten. Ik hou van jullie!

Lieve Ger, het mooiste voor het laatst bewaren.. Dat is waarom je pas hier wordt genoemd in het dankwoord. Jij

bent al zo lang mijn maatje en geliefde en nog steeds hebben we het zo goed samen! Je liefde, steun, vertrouwen,

geduld, toewijding en geloof zijn mijn vaste basis. Je was er altijd voor me, had een luisterend oor, gaf me de

ruimte om extra te werken wanneer dat nodig was (Mar, het is geen typemachine..), had geduld als ik even niet

zo gezellig was en wist me op te fleuren met gezelligheid, humor en een kop thee. Het is niet voor niets dat jij

mijn paranimf bent. Je bent zo vertrouwd voor me en ik ben stapelgek op je! Wat is het heerlijk dat we samen

een prachtige dochter mochten krijgen. Jade is ons wondertje en geeft ons zoveel plezier en levensinhoud. En

nu verwachten we nog een (a)pril wondertje, wat een mooi vooruitzicht! Ik bid dat onze levens voor altijd aan

elkaar verbonden blijven en we samen nog heel veel mooie momenten mogen beleven. Dankjewel voor wie je

bent!

‘Laat ieder van u de gaven die hij van God heeft gekregen, gebruiken om anderen daarmee te helpen’ (1 Petrus

4:10a). De vaardigheden die ik nodig had om dit proefschrift te schrijven, heb ik mezelf niet gegeven. Ik dank

Hem die mij heeft gemaakt voor Zijn liefde voor ons allemaal! Prijs de Heer!

138541-Willems_BNW.indd 171 31-10-19 10:08

173

Research Institute for Health Research SHARE

This thesis is published within the Research Institute SHARE (Science in Healthy Ageing and healthcaRE) of the

University Medical Center Groningen / University of Groningen. Further information regarding the institute and

its research can be obtained from our internet site: http://www.share.umcg.nl/.

More recent theses can be found in the list below.

(supervisors are between brackets)

2019

Ong KJ

Economic aspects of public health programmes for infectious disease control; studies on Human

Immunodeficiency Virus & Human Papillomavirus

(prof MJ Postma, prof M Jit, dr K Soldan, dr AJ van Hoek)

Oosterhaven J

Hand eczema; impact, treatment and outcome measures

(dr MLA Schuttelaar, prof PJ Coenraads)

Postma DBW

Affordance-based control in running to catch fly balls

(prof KAPM Lemmink, dr FTJM Zaal)

Nuenen FM van

Screening of distress and referral need in Dutch oncology practice

(prof HBM van de Wiel, dr JEHM Hoekstra-Weebers, dr SM Donofrio)

Olthof SBH

Small-sided games in youth soccer; performance and behavior compared to the official match

(prof KAPM Lemmink, dr WGP Frencken)

Yin H

Epidemiology and treatment of mental disorders in a rapidly developing urban region in China; a study of

prevalence, risk factors and e-applications

(prof RA Schoevers, dr KJ Wardenaar)

Kuipers DA

Design for transfer; figural transfer through metaphorical recontextualization in games for health

(prof JPEN Pierie, dr JT Prins)

138541-Willems_BNW.indd 172 31-10-19 10:08

173

Research Institute for Health Research SHARE

This thesis is published within the Research Institute SHARE (Science in Healthy Ageing and healthcaRE) of the

University Medical Center Groningen / University of Groningen. Further information regarding the institute and

its research can be obtained from our internet site: http://www.share.umcg.nl/.

More recent theses can be found in the list below.

(supervisors are between brackets)

2019

Ong KJ

Economic aspects of public health programmes for infectious disease control; studies on Human

Immunodeficiency Virus & Human Papillomavirus

(prof MJ Postma, prof M Jit, dr K Soldan, dr AJ van Hoek)

Oosterhaven J

Hand eczema; impact, treatment and outcome measures


Postma DBW

Affordance-based control in running to catch fly balls

(prof KAPM Lemmink, dr FTJM Zaal)

Nuenen FM van

Screening of distress and referral need in Dutch oncology practice

(prof HBM van de Wiel, dr JEHM Hoekstra-Weebers, dr SM Donofrio)

Olthof SBH

Small-sided games in youth soccer; performance and behavior compared to the official match

(prof KAPM Lemmink, dr WGP Frencken)

Yin H

Epidemiology and treatment of mental disorders in a rapidly developing urban region in China; a study of

prevalence, risk factors and e-applications

(prof RA Schoevers, dr KJ Wardenaar)

Kuipers DA

Design for transfer; figural transfer through metaphorical recontextualization in games for health

(prof JPEN Pierie, dr JT Prins)

138541-Willems_BNW.indd 173 31-10-19 10:08

174

Belak A

The health of segregated Roma: first-line views and practices

(prof SA Reijneveld, prof A Geckova, dr JP van Dijk)

Kieffer TEC

Adaptation and modulation of memory and regulatory T cells in pregnancy

(prof SA Scherjon, dr MM Faas, dr JR Prins)

Kuiper D

Health of offspring of subfertile couples

(prof M Hadders-Algra, prof A Hoek, prof MJ Heineman)

Huang Y

Use of real-world evidence in pharmacoeconomic analysis

(prof FM Haaijer-Ruskamp, prof MJ Postma, dr P Vemer)

Cuijpers LS

Coordination dynamics in crew rowing

(prof KAPM Lemmink, dr FTJM Zaal, dr HJ de Poel)

Dittmar D

Multiple aspects of contact allergy; immunology, patch test methodology and epidemiology


Beemster T

Quality improvement of vocational rehabilitation in patients with chronic musculoskeletal pain and reduced work

participation

(prof MF Reneman, prof MHW Frings-Dresen, prof CAM van Bennekom, dr JM van Velzen)

28.08.2019 EXPAND

Geerse O

The impact of lung cancer; towards high-quality and patient-centered supportive care

(prof HAM Kerstjens, prof MY Berger, dr TJN Hiltermann, dr AJ Berendsen)

Dierselhuis EF

Advances of treatment in atypical cartilaginous tumours

(prof SK Bulstra, prof AJH Suurmeijer, dr PC Jutte, dr M Stevens)

175

Gils A van

Developing e-health applications to promote a patient-centered approach to medically unexplained symptoms

(prof JGM Rosmalen, prof RA Schoevers)

Notenbomer A

Frequent sickness absence; a signal to take action

(prof U Bultmann, prof W van Rhenen, dr CAM Roelen)

Bishanga DR

Improving access to quality maternal and newborn care in low-resource settings: the case of Tanzania

(prof J Stekelenburg, dr YM Kim)

Tura AK

Safe motherhood: severe maternal morbidity and mortality in Eastern Ethiopia

(prof SA Scherjon, prof J Stekelenburg, dr TH van den Akker)

Vermeiden CJ

Safe motherhood : maternity waiting homes in Ethiopia to improve women’s access to maternity care

(prof J Stekelenburg, dr TH van den Akker)

Schrier E

Psychological aspects in rehabilitation

(prof PU Dijkstra, prof JHB Geertzen)

For earlier theses visit our website.

138541-Willems_BNW.indd 174 31-10-19 10:08

174

Belak A

The health of segregated Roma: first-line views and practices

(prof SA Reijneveld, prof A Geckova, dr JP van Dijk)

Kieffer TEC

Adaptation and modulation of memory and regulatory T cells in pregnancy

(prof SA Scherjon, dr MM Faas, dr JR Prins)

Kuiper D

Health of offspring of subfertile couples

(prof M Hadders-Algra, prof A Hoek, prof MJ Heineman)

Huang Y

Use of real-world evidence in pharmacoeconomic analysis

(prof FM Haaijer-Ruskamp, prof MJ Postma, dr P Vemer)

Cuijpers LS

Coordination dynamics in crew rowing

(prof KAPM Lemmink, dr FTJM Zaal, dr HJ de Poel)

Dittmar D

Multiple aspects of contact allergy; immunology, patch test methodology and epidemiology


Beemster T

Quality improvement of vocational rehabilitation in patients with chronic musculoskeletal pain and reduced work

participation

(prof MF Reneman, prof MHW Frings-Dresen, prof CAM van Bennekom, dr JM van Velzen)

28.08.2019 EXPAND

Geerse O

The impact of lung cancer; towards high-quality and patient-centered supportive care

(prof HAM Kerstjens, prof MY Berger, dr TJN Hiltermann, dr AJ Berendsen)

Dierselhuis EF

Advances of treatment in atypical cartilaginous tumours

(prof SK Bulstra, prof AJH Suurmeijer, dr PC Jutte, dr M Stevens)

175

Gils A van

Developing e-health applications to promote a patient-centered approach to medically unexplained symptoms

(prof JGM Rosmalen, prof RA Schoevers)

Notenbomer A

Frequent sickness absence; a signal to take action

(prof U Bultmann, prof W van Rhenen, dr CAM Roelen)

Bishanga DR

Improving access to quality maternal and newborn care in low-resource settings: the case of Tanzania

(prof J Stekelenburg, dr YM Kim)

Tura AK

Safe motherhood: severe maternal morbidity and mortality in Eastern Ethiopia

(prof SA Scherjon, prof J Stekelenburg, dr TH van den Akker)

Vermeiden CJ

Safe motherhood : maternity waiting homes in Ethiopia to improve women’s access to maternity care

(prof J Stekelenburg, dr TH van den Akker)

Schrier E

Psychological aspects in rehabilitation

(prof PU Dijkstra, prof JHB Geertzen)

For earlier theses visit our website.

138541-Willems_BNW.indd 175 31-10-19 10:08


lifestylewith



Mariël Willems-J-J-JJongsma


Ma

riëlWillem

s-Jong

sma

Lifestylecha

nge

ina

dults

with

intellectuald

isab

ilitiesJ

g

UITNODIGING

Voor het bijwonen van de openbare verdediging

van het proefschrift

Lifestyle change in adults withintellectual disabilities

Use and effectiveness ofbehaviour change techniques

door


Op maandag 9 december 2019om 14.30 uur

in het academiegebouw vande Rijksuniversiteit Groningen,

Broerstraat 5 te Groningen

Paranimfen:

Gerjan Willems 0610394409Ilse Mol-Jongsma 0641422911


Goudsbloemstraat 508012XN Zwolle

[email protected]

UITNODIGING lifestyle · e m s-J o n g s m a L i f e s t y l e c h a n g e i n a d u l t s w i t h...

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Transcript of UITNODIGING lifestyle · e m s-J o n g s m a L i f e s t y l e c h a n g e i n a d u l t s w i t h...