University of Groningen Healthy lifestyle of people with intellectual disabilities Steenbergen, Rianne

(1)

University of Groningen

Healthy lifestyle of people with intellectual disabilities

Steenbergen, Rianne

DOI:

10.33612/diss.132702260

IMPORTANT NOTE: You are advised to consult the publisher's version (publisher's PDF) if you wish to cite from

it. Please check the document version below.

Document Version

Publisher's PDF, also known as Version of record

Publication date:

2020

Link to publication in University of Groningen/UMCG research database

Citation for published version (APA):

Steenbergen, R. (2020). Healthy lifestyle of people with intellectual disabilities. University of Groningen.

https://doi.org/10.33612/diss.132702260

Copyright

Other than for strictly personal use, it is not permitted to download or to forward/distribute the text or part of it without the consent of the author(s) and/or copyright holder(s), unless the work is under an open content license (like Creative Commons).

Take-down policy

If you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediately and investigate your claim.

Downloaded from the University of Groningen/UMCG research database (Pure): http://www.rug.nl/research/portal. For technical reasons the number of authors shown on this cover page is limited to 10 maximum.

(2)

6 7

Chapter 1

(3)

8

People with intellectual disabilities

People with intellectual disabilities have both intellectual and adaptive functioning deficits in conceptual, social, and practical domains that begin during the developmental period (Schalock et al., 2010; American Psychiatric Association, 2013). In the Netherlands, 142.000 people (0.85%) have an intellectual disability (Volksgezondheidenzorg, 2019), and most of them are supported by healthcare organizations. It is estimated that approximately 68.000 (48%) of this particular population have a severe to profound intellectual disability, and 74.000 (52%) have a mild to moderate intellectual disability (Volksgezondheidenzorg, 2019). In accordance with the different levels of intellectual disabilities, different types or arrangements of care and support are provided by healthcare organizations such as long-term care; social support; and support in working, learning and daytime activities (Vilans, 2019).

Support by healthcare organizations

In the Netherlands, an important part of the support provided by healthcare organizations is the support of a healthy lifestyle. This is important because people with intellectual disabilities experience above average health risks (van Schrojensteijn-Lantman de Valk, 2008); they demonstrate extremely low levels of physical activity (Hilgenkamp, Reis, Van Wijck & Evenhuis, 2012; Dairo, Collett, Dawes, & Oskrochi, 2016; Hsieh, Heller, Bershadsky, & Taub, 2015; Stancliffe & Anderson, 2017), high levels of sedentary behaviour (Melville et al., 2018; Melville et al., 2017), and unhealthy eating habits (Haveman et al., 2010; Gephart & Loman, 2013; Phillips & Holland, 2011). Healthcare organizations for these individuals consider that it is the organization’s task to promote and support a healthy lifestyle (Naaldenberg et al., 2013; Kuijken et al., 2016) because it is related to improved quality of life, more participation in society (Heller, McCubbin, Drum & Peterson, 2011), more independence in activities of daily living (Hilgenkamp, Van Wijck & Evenhuis, 2011; Van Schijndel-Speet, Evenhuis, Van Wijck & Echteld, 2014) and a consequent decrease of healthcare costs.

Lifestyle support by health care organizations

As lifestyle interventions for the general population often assume a certain level of independence and cognitive capacities, they may be difficult to understand or be inaccessible for people with intellectual disabilities. Consequently, healthcare organizations for this population perform a range of partly self-developed initiatives and interventions to support and improve a healthy lifestyle, specifically aiming at improving physical activity and to a lesser extent at healthy nutrition. These initiatives and interventions are tailored to the needs and possibilities of people with different levels of intellectual disabilities and according with the different types and arrangements of care and support (Kuijken et al., 2019).

9 In general, implementation and maintenance of changes and improvements in healthcare are complex processes (Taylor et al., 2014; Deming 1986; Grol et al., 2005; Bartholomew et al., 2016; Langly et al., 2009; Green and Kreuter, 2005; Prochaska and Velicer, 1997; Damschroder et al., 2009; Glasgow et al., 1999; Sallis et al., 2006; Fleuren et al., 2014). This applies even more so to these processes in healthcare organizations for people with intellectual disabilities where the complexity of practice is reflected at different levels within and outside of the organization. On public policy and community levels, shifts in paradigms regarding participation and inclusion of people with intellectual disabilities were present during the last decades also resulting in processes of deinstitutionalization amongst other aspects (Perenboom & Chorus, 2003; Schippers et al., 2018). Also, healthcare organizations supporting people with intellectual disabilities received new requirements regarding participation and inclusion with the introduction and ratification of the UN convention (2006). The changing visions related to participation and inclusion (Schippers et al., 2018) may also contribute to the complexity of lifestyle support in practice. In daily practice, professionals as well as persons with intellectual disabilities and their representatives experience difficulties in defining the concept of autonomy (Schippers et al., 2018) related to a vision of a healthy lifestyle with a consequence of different visions about the support of a healthy lifestyle as a part of the daily support. Another challenge of inclusion with respect to the role of healthcare organizations is the search for associations with living, day-care, and leisure activities for the purpose of social participation (Schippers et al., 2018). There are opportunities for improvement for sharing and applying knowledge about supporting people with intellectual disabilities to join sports clubs or information in the local community with regard to the awareness of available sports (Haarmann et al., 2019).

At interpersonal and operational levels, there are differences in the needs and possibilities of lifestyle support (Kuijken et al., 2016; Naaldenberg et al., 2013). Most of the time, it is adapted to the cognitive level of intellectual disability and the opportunities present in the environment of the involved people. This may lead to tailor-made lifestyle support that is, therefore, less easily transferable to other situations. Additionally, organizations are confronted with practical and policy changes such as staff, financing, supporting computer systems, available time, material resources, and facilities. When staff involved in the tailor-made lifestyle support or interventions is leaving or when the financing ends, valuable lifestyle interventions and initiatives may easily disappear.

Theoretical framework of the thesis

In this complex and changing environment, implementation and maintenance of an active and healthy lifestyle into the daily support of persons with intellectual disabilities may be difficult (Grol et al., 2005; Glasgow et al., 1999; Fleuren et al., 2014). Therefore, to improve health, a socio-ecological

(4)

8

People with intellectual disabilities

People with intellectual disabilities have both intellectual and adaptive functioning deficits in conceptual, social, and practical domains that begin during the developmental period (Schalock et al., 2010; American Psychiatric Association, 2013). In the Netherlands, 142.000 people (0.85%) have an intellectual disability (Volksgezondheidenzorg, 2019), and most of them are supported by healthcare organizations. It is estimated that approximately 68.000 (48%) of this particular population have a severe to profound intellectual disability, and 74.000 (52%) have a mild to moderate intellectual disability (Volksgezondheidenzorg, 2019). In accordance with the different levels of intellectual disabilities, different types or arrangements of care and support are provided by healthcare organizations such as long-term care; social support; and support in working, learning and daytime activities (Vilans, 2019).

Support by healthcare organizations

In the Netherlands, an important part of the support provided by healthcare organizations is the support of a healthy lifestyle. This is important because people with intellectual disabilities experience above average health risks (van Schrojensteijn-Lantman de Valk, 2008); they demonstrate extremely low levels of physical activity (Hilgenkamp, Reis, Van Wijck & Evenhuis, 2012; Dairo, Collett, Dawes, & Oskrochi, 2016; Hsieh, Heller, Bershadsky, & Taub, 2015; Stancliffe & Anderson, 2017), high levels of sedentary behaviour (Melville et al., 2018; Melville et al., 2017), and unhealthy eating habits (Haveman et al., 2010; Gephart & Loman, 2013; Phillips & Holland, 2011). Healthcare organizations for these individuals consider that it is the organization’s task to promote and support a healthy lifestyle (Naaldenberg et al., 2013; Kuijken et al., 2016) because it is related to improved quality of life, more participation in society (Heller, McCubbin, Drum & Peterson, 2011), more independence in activities of daily living (Hilgenkamp, Van Wijck & Evenhuis, 2011; Van Schijndel-Speet, Evenhuis, Van Wijck & Echteld, 2014) and a consequent decrease of healthcare costs.

Lifestyle support by health care organizations

As lifestyle interventions for the general population often assume a certain level of independence and cognitive capacities, they may be difficult to understand or be inaccessible for people with intellectual disabilities. Consequently, healthcare organizations for this population perform a range of partly self-developed initiatives and interventions to support and improve a healthy lifestyle, specifically aiming at improving physical activity and to a lesser extent at healthy nutrition. These initiatives and interventions are tailored to the needs and possibilities of people with different levels of intellectual disabilities and according with the different types and arrangements of care and support (Kuijken et al., 2019).

9 In general, implementation and maintenance of changes and improvements in healthcare are complex processes (Taylor et al., 2014; Deming 1986; Grol et al., 2005; Bartholomew et al., 2016; Langly et al., 2009; Green and Kreuter, 2005; Prochaska and Velicer, 1997; Damschroder et al., 2009; Glasgow et al., 1999; Sallis et al., 2006; Fleuren et al., 2014). This applies even more so to these processes in healthcare organizations for people with intellectual disabilities where the complexity of practice is reflected at different levels within and outside of the organization. On public policy and community levels, shifts in paradigms regarding participation and inclusion of people with intellectual disabilities were present during the last decades also resulting in processes of deinstitutionalization amongst other aspects (Perenboom & Chorus, 2003; Schippers et al., 2018). Also, healthcare organizations supporting people with intellectual disabilities received new requirements regarding participation and inclusion with the introduction and ratification of the UN convention (2006). The changing visions related to participation and inclusion (Schippers et al., 2018) may also contribute to the complexity of lifestyle support in practice. In daily practice, professionals as well as persons with intellectual disabilities and their representatives experience difficulties in defining the concept of autonomy (Schippers et al., 2018) related to a vision of a healthy lifestyle with a consequence of different visions about the support of a healthy lifestyle as a part of the daily support. Another challenge of inclusion with respect to the role of healthcare organizations is the search for associations with living, day-care, and leisure activities for the purpose of social participation (Schippers et al., 2018). There are opportunities for improvement for sharing and applying knowledge about supporting people with intellectual disabilities to join sports clubs or information in the local community with regard to the awareness of available sports (Haarmann et al., 2019).

At interpersonal and operational levels, there are differences in the needs and possibilities of lifestyle support (Kuijken et al., 2016; Naaldenberg et al., 2013). Most of the time, it is adapted to the cognitive level of intellectual disability and the opportunities present in the environment of the involved people. This may lead to tailor-made lifestyle support that is, therefore, less easily transferable to other situations. Additionally, organizations are confronted with practical and policy changes such as staff, financing, supporting computer systems, available time, material resources, and facilities. When staff involved in the tailor-made lifestyle support or interventions is leaving or when the financing ends, valuable lifestyle interventions and initiatives may easily disappear.

Theoretical framework of the thesis

In this complex and changing environment, implementation and maintenance of an active and healthy lifestyle into the daily support of persons with intellectual disabilities may be difficult (Grol et al., 2005; Glasgow et al., 1999; Fleuren et al., 2014). Therefore, to improve health, a socio-ecological

(5)

10

approach is promoted in order to create a system change (Sallis et al., 2006; Bartholomew et al., 2011; McLeroy, 1988). In this thesis, the socio-ecological model for health promotion (McLeroy, 1988) was used as a theoretical framework, see Figure 1. This socio-ecological model shows the dynamic interrelations among various personal and environmental factors on health promotion. With respect to the different levels of the socio-ecological model, the main focus was at the operational and organizational levels.

Figure 1. Socio-ecological model for health promotion (McLeroy, 1988)

Implementation and maintenance of lifestyle support

At the organizational and operational levels, healthcare organizations can improve their own lifestyle support for persons with intellectual disabilities by obtaining more insight into the currently used lifestyle support and crucial factors for successful implementation (Grol et al., 2005; Bartholomew et al., 2011; Fleuren et al., 2014). However, an overview and analyses of the currently used lifestyle support targeting healthy physical activity and nutrition is lacking. In addition, it is unknown to what extent crucial factors for successful implementation are taken into consideration by health care organizations supporting people with intellectual disabilities. Lastly, there are no instruments available to analyze the determinants that influence the implementation of lifestyle support within healthcare organizations for these individuals. In other settings, the Measurement Instrument for Determinants of Innovations was used to evaluate the implementation of innovations. It is unknown whether this instrument is beneficial for objectively evaluating implementation of lifestyle interventions in healthcare organizations for people with intellectual disabilities.

Attitudes of Direct Support Persons

At the operational level, the role of direct support persons in encouraging and motivating people with intellectual disabilities seems to be a crucial factor (Ptomey et al., 2018; Alesi & Pepi, 2015;

11 Spanos et al., 2013; Buntinx & Schalock, 2010). A better understanding of the attitudes of direct support persons about promoting healthy physical activity appears to be important for a next step in sustainable implementation of physical activity support (Grol et al., 2005; Martin et al., 2011), however, they are unknown because an instrument to measure attitudes is lacking. It is also not established which determinants may influence the attitudes of direct support persons.

Improving maintenance and quality assurance

Due to the complexity of implementation processes, the maintenance and quality assurance of a healthy lifestyle in organizations for people with intellectual disabilities is challenging. The process of recurring attention for the different steps of Planning, Doing, Checking, and Acting (PDCA) (Deming, 1986) is widely used within healthcare for the control and continuous improvement of processes and products (Taylor et al., 2014). However, until now, the PDCA cycle has not been widely used and is not operationalized to evaluate complex lifestyle implementation processes in healthcare organizations for people with intellectual disabilities.

This thesis aims to contribute to a better insight into implementation processes of lifestyle support in the complex and changing environment of healthcare organizations for people with intellectual disabilities and herewith aims to contribute to the maintenance and quality assurance of this lifestyle support in health care organizations.

Outline of the thesis

The first research questions of this thesis are whether health care organizations supporting people with intellectual disabilities make use of theory-driven multiple intervention components and multiple levels of influence in their lifestyle approaches aiming at physical activity and nutrition and whether there are conditions for sustainability in the lifestyle approaches (Chapter 2). Chapter 3

aims to ascertain if the Measurement Instrument for Determinants of Innovations is beneficial for objectively evaluating the implementation of lifestyle interventions. The purpose of Chapter 4 is to

construct a questionnaire that measures the attitude of direct support persons towards promoting health enhancing physical activity for persons with intellectual disabilities, whereas, the aim of

Chapter 5 is to explore the attitude of direct support persons towards promoting health enhancing

physical activity of these individuals who receive care and support from healthcare organizations. Subsequently, the objective of Chapter 6 is to develop an evaluation model based on the PDCA cycle,

operationalized with the key implementation and maintenance components in lifestyle approaches of healthcare organizations for people with intellectual disabilities and to illustrate its application using a case study.

(6)

10

approach is promoted in order to create a system change (Sallis et al., 2006; Bartholomew et al., 2011; McLeroy, 1988). In this thesis, the socio-ecological model for health promotion (McLeroy, 1988) was used as a theoretical framework, see Figure 1. This socio-ecological model shows the dynamic interrelations among various personal and environmental factors on health promotion. With respect to the different levels of the socio-ecological model, the main focus was at the operational and organizational levels.

Figure 1. Socio-ecological model for health promotion (McLeroy, 1988)

Implementation and maintenance of lifestyle support

At the organizational and operational levels, healthcare organizations can improve their own lifestyle support for persons with intellectual disabilities by obtaining more insight into the currently used lifestyle support and crucial factors for successful implementation (Grol et al., 2005; Bartholomew et al., 2011; Fleuren et al., 2014). However, an overview and analyses of the currently used lifestyle support targeting healthy physical activity and nutrition is lacking. In addition, it is unknown to what extent crucial factors for successful implementation are taken into consideration by health care organizations supporting people with intellectual disabilities. Lastly, there are no instruments available to analyze the determinants that influence the implementation of lifestyle support within healthcare organizations for these individuals. In other settings, the Measurement Instrument for Determinants of Innovations was used to evaluate the implementation of innovations. It is unknown whether this instrument is beneficial for objectively evaluating implementation of lifestyle interventions in healthcare organizations for people with intellectual disabilities.

Attitudes of Direct Support Persons

At the operational level, the role of direct support persons in encouraging and motivating people with intellectual disabilities seems to be a crucial factor (Ptomey et al., 2018; Alesi & Pepi, 2015;

11 Spanos et al., 2013; Buntinx & Schalock, 2010). A better understanding of the attitudes of direct support persons about promoting healthy physical activity appears to be important for a next step in sustainable implementation of physical activity support (Grol et al., 2005; Martin et al., 2011), however, they are unknown because an instrument to measure attitudes is lacking. It is also not established which determinants may influence the attitudes of direct support persons.

Improving maintenance and quality assurance

Due to the complexity of implementation processes, the maintenance and quality assurance of a healthy lifestyle in organizations for people with intellectual disabilities is challenging. The process of recurring attention for the different steps of Planning, Doing, Checking, and Acting (PDCA) (Deming, 1986) is widely used within healthcare for the control and continuous improvement of processes and products (Taylor et al., 2014). However, until now, the PDCA cycle has not been widely used and is not operationalized to evaluate complex lifestyle implementation processes in healthcare organizations for people with intellectual disabilities.

This thesis aims to contribute to a better insight into implementation processes of lifestyle support in the complex and changing environment of healthcare organizations for people with intellectual disabilities and herewith aims to contribute to the maintenance and quality assurance of this lifestyle support in health care organizations.

Outline of the thesis

The first research questions of this thesis are whether health care organizations supporting people with intellectual disabilities make use of theory-driven multiple intervention components and multiple levels of influence in their lifestyle approaches aiming at physical activity and nutrition and whether there are conditions for sustainability in the lifestyle approaches (Chapter 2). Chapter 3

aims to ascertain if the Measurement Instrument for Determinants of Innovations is beneficial for objectively evaluating the implementation of lifestyle interventions. The purpose of Chapter 4 is to

construct a questionnaire that measures the attitude of direct support persons towards promoting health enhancing physical activity for persons with intellectual disabilities, whereas, the aim of

Chapter 5 is to explore the attitude of direct support persons towards promoting health enhancing

physical activity of these individuals who receive care and support from healthcare organizations. Subsequently, the objective of Chapter 6 is to develop an evaluation model based on the PDCA cycle,

operationalized with the key implementation and maintenance components in lifestyle approaches of healthcare organizations for people with intellectual disabilities and to illustrate its application using a case study.

(7)

12

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.

Bartholomew, K. L., Parcel, G. S., Kok, G., & Gottlieb, N. H. (2011). Planning health promotion programs: An intervention mapping approach (3rd ed.). San Francisco, CA, Hoboken, NJ: Jossey-Bass, Wiley.

Buntinx WHE, & Schalock RL (2010). Models of disability, quality of life, and individualized supports: implications for professional practice in intellectual disability. Journal of Policy and Practice in Intellectual Disabilities, 7, 283–294. http://dx.doi.org/10.1111/j. 1741-1130.2010.00278. Damschroder, L.J., Aron, D.C., Keith, R.E. et al. Fostering implementation of health services research

findings into practice: a consolidated framework for advancing implementation science. Implementation Sci 4, 50 (2009). https://doi.org/10.1186/1748-5908-4-50

Dairo, Y. M., Collett, J., Dawes, H., & Oskrochi, G. R. (2016). Physical activity levels in adults with intellectual disabilities: A systematic review. Preventive Medicine Reports, 4, 209-219. doi:https:// doi.org/10.1016/j.pmedr.2016.06.008

Deming W. Out of the crisis. Cambridge: Massachusetts Institute of Technology; 1986.

Fleuren, M. A. H., Paulussen, T. G. W. M., van Dommelen, P., & van Buuren, S. (2014). Towards a measurement instrument for determinants of innovations. International Journal for Quality in Health Care, 26, 501–510. https://doi.org/10.1093/intqhc/mzu060

Gephart, E. F., & Loman, D. G. (2013). Use of prevention and prevention plus weight management guidelines for youth with developmental disabilities living in group homes. Journal of Pediatric Health Care 27(2), 98-108. doi:10.1016/j.pedhc.2011.07.004

Glasgow, R. E., Vogt, T. M., & Boles, S. M. (1999). Evaluating the public health impact of health promotion interventions: The RE-AIM framework. American Journal of Public Health, 89, 1322–1327.

Green, L. W., & Kreuter, M. W. (1991). Health promotion planning: An educational and environmental approach. Palo Alto, CA: Mayfield Publishing Company.

Grol, R., Wensing, M., & Eccles, M. (2005). Improving patient care: The implementation of change in clinical practice. Edinburgh: Elsevier.

Haarmann A, Voss H, & Boeije H. (2019) Sporten en bewegen door mensen met een lichte verstandelijke beperking. Belemmeringen en mogelijkheden. Nivel.

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

13 risks in aging persons with intellectual disabilities: an overview of recent studies. Journal of Policy and Practice in Intellectual Disabilities, 7(1), 59-69.

Heller, T., McCubbin, J. A., Drum, C., & Peterson, J. (2011). Physical activity and nutrition

health promotion interventions: what is working for people with intellectual disabilities? Intellectual and Developmental Disabilities, 49(1), 26–36.

Hilgenkamp, T. I., Reis, D., van Wijck, R., & Evenhuis, H. M. (2012). Physical activity levels in older adults with intellectual disabilities are extremely low. Research in Developmental Disabilities, 33(2), 477-483.

Hsieh, K., Heller, T., Bershadsky, J., & Taub, S. (2015). Impact of adulthood stage and social-

environmental context on body mass index and physical activity of individuals with intellectual disability. Intellectual and Developmental Disabilities, 53(2), 100-113. doi:10.1352/1934-9556- 53.2.100

Kuijken, N.M.J., Naaldenberg, J., Vlot-van Anrooij, K., Nijhuis-van der Sanden, M.W.G., van

Schrojenstein Lantman-de Valk, H.M.J., & Leusink, G.L. (2019). Integrating health promotion in everyday life of people with ID - extent to which current initiatives take context into account.

Kuijken NM, Naaldenberg J, Nijhuis-Van der Sanden MW, Schrojenstein-Lantman de Valk HM. Healthy living according to adults with intellectual disabilities: Towards tailoring health promotion initiatives. J Intellect Disabil Res 2016;60:228e241.

Langley, G., Moen, R., Nolan, K., Nolan, T., Norman, C., Provost, L., 2009. The Improvement Guide, 2nd Edition. Jossey-Bass, San Francisco

Martin E, McKenzie K, Newman E, Bowden K, Graham Morris P (2011). Care staff intentions to support adults with an intellectual disability to engage in physical activity: An application of the Theory of Planned Behaviour. Research in Developmental Disabilities, 32, 2535–2541.McLeroy, K.R., Bibeau, D., Steckler, A., & Glanz, K. (1988). An ecological perspective on health

promotion programs. Health education quarterly, 15(4), 351-377.

Melville, C. A., Oppewal, A., Elinder, L. S., Freiberger, E., Guerra-Balic, M., Hilgenkamp, T. I. M., Gine- Garriga, M. (2017). Definitions, measurement and prevalence of sedentary behaviour in adults with intellectual disabilities - A systematic review. Preventive Medicine, 97, 62-71. doi:10.1016/j. ypmed.2016.12.052

Melville, C. A., McGarty, A., Harris, L., Hughes-McCormack, L., Baltzer, M., McArthur, L. A., Cooper, S. A. (2018). A population-based, cross-sectional study of the prevalence and correlates of sedentary behaviour of adults with intellectual disabilities. Journal of Intellectual Disability Research 62(1), 60-71. doi:10.1111/jir.12454

(8)