The tailoring and implementation of evidence-based multi-component weight management interventions for adults with intellectual disabilities who are obese: a whole systems approach
Background
People with intellectual disabilities have a shorter life expectancy compared to their non-disabled peers (1-4). A confidential inquiry in 2013 reviewed the deaths of 247 people with intellectual disability in England and Wales and found that 22% were younger than 50 years when they died compared to 9% of the general population (5). The Inquiry found that 48% of the deaths were avoidable or preventable, either by public health interventions, quality healthcare or both. Data for 2014/15 revealed that the Standardized Mortality Ratio (SMR) for people with intellectual disabilities in England was 298.1 (i.e. almost three times the expected number of deaths occurred (6).
Potentially avoidable deaths in people with intellectual disabilities include heart disease, stroke and diabetes. Obesity is a major risk factor for these medical conditions and adults with intellectual disabilities are more likely to be obese than their non-disabled peers (7).
Who is affected by the problem?
Obesity (BMI ≥ 30) affects 30% of female and 20% of male adults with intellectual disabilities who are registered with primary healthcare and who have had a body mass index (BMI) recorded compared to 10% of female and 7.4% male people without intellectual disabilities (7).
People with intellectual disabilities tend to become obese at a much earlier age than the general population (8, 9). They are much more likely to experience obesity-related medical conditions at a much younger age than the general population including Type 2 diabetes, coronary heart disease, and certain cancers (10-13).
Potential risk factors for people with intellectual disabilities who are obese include: gender (women > men), age (younger > older), cause (i.e. genetic / chromosomal), level / type of disability, individuals with mild intellectual disabilities who live in less restrictive residential settings, prescription of anti-psychotic drugs, poor dietary habits, very high levels of physical inactivity, sedentary behaviour and poverty (14-19).
Some people with intellectual disabilities may be unknown to health services and therefore not offered or referred to weight management programmes (20). People with intellectual disabilities are also more likely to experience inequities in healthcare including: communication challenges, a lack of support, discriminatory attitudes by healthcare staff, and a failure by service providers to make ‘reasonable adjustments’ to meet this population’s needs (3, 21-24).
UK recommended evidence-based multi-component weight management programmes (25) may contribute to long-term reductions in serious medical conditions linked to obesity, including heart disease, stroke and diabetes, which are major contributors to premature deaths (and health inequalities) in people with intellectual disabilities. The overall aim of the PhD thesis was to explore whether evidence-based multi-component weight management interventions can be effectively tailored and implemented for adults with intellectual disabilities who are obese.
Who was involved in the research and how were they involved?
Include relevant members of People with intellectual disabilities were involved in various stages of the comprehensive programme of research. Ethical approval was obtained for their involvement and they worked with the PhD student to co-produce research materials e.g. easy-read materials to enable their involvement. The Advisers and participants were recruited through a Self-Advocacy Group for People with Intellectual Disabilities. They supported the PhD student and worked together with members of the PhD’s Research Supervisory and Support Team.
What did the research involve?
This PhD programme of research involved three main phases. Phase one (comprising an integrative review and a mapping exercise of weight management service provision) was conducted to explore what types of multi-component weight management interventions are delivered to adults with intellectual disabilities, how they are delivered, by whom and in what setting. Phase two comprised two qualitative studies and one mixed methods study: (1) semi-structured interviews with healthcare practitioners who offer or deliver weight management interventions; (2) co-produced research involving people with intellectual disabilities using focus groups of adults with intellectual disabilities to explore their views and experiences of eating well and living well; (3) survey of carers to explore their views of what helps or hinders people with intellectual disabilities from eating well and living well. Phase three involved a synthesis of findings from phases one and two.
Findings and what does this mean?
The overall findings imply that it is inequitable support and a range of issues and barriers rather than poor lifestyle choices or any lack of motivation, which hinders adults with intellectual disabilities from managing their weight if they want to. Action is needed to address the range of issues and barriers experienced by this population. Simply expecting individuals to be able to access and to take part in weight management interventions designed for the general population (e.g. diet-only or exercise-only interventions focus primarily on individual behaviour change to achieve short-term (only) weight loss) is unrealistic.
The issues and barriers faced by people with intellectual disabilities include: transport issues, financial constraints, immobility issues, communication difficulties, and information provided by services may not be accessible for people with intellectual disabilities. Individuals with intellectual disabilities may also be reliant on carers to support their choices. Carers may lack time to shop for, and prepare healthier meals, which can be time-consuming. Inevitably this may lead to the frequent use of unhealthier ready-made convenience / takeaway meals.
Wider impact on health inequalities / health equity
There is growing evidence of the wider challenges faced in individual lifestyle / behaviour changes associated with weight management for people with intellectual disabilities. For example, a lack of proactive health promotion guidelines/policies, a lack of health education / training, and poor communication within and between services and the people who use those services (26). It is now being strongly argued that wider levels of support are needed to effectively obtain and sustain weight management goals in the longer-term for both the general population as well as for people with intellectual disabilities (27). Unfortunately, lifestyle / obesity weight management interventions for people with intellectual disabilities are not easily being implemented within organisations or clinical practice (26). The interventions themselves are not overly complicated though. It is the organisations and surrounding systems that are complex. There is a greater need therefore to consider how to implement interventions within such complex organisations and systems (26).
Greater knowledge and understanding of the `context’ of how the problem of obesity has developed and how the problem is sustained in people with intellectual disabilities is required as well as a greater understanding of the `mechanisms’ of changes which need to be applied to achieve longer-term sustainable weight management. A `whole systems’ approach is needed. For example:
• Organisations should consider the Medical Research Council’s framework for developing complex interventions (28) and the standards for evaluating weight management interventions (29) when designing studies. Clear and accessible healthy lifestyle and weight management (easy-read) advice should be made available to people with intellectual disabilities and carers / support staff. Training provision in weight management should be made available for carers / support staff, healthcare practitioners as well as individuals with intellectual disabilities.
• Policy-makers should co-develop targeted guidance on weight management with, and for, people who have intellectual disabilities (and their carers). The guidance which is co-developed should gather and provide examples of how to effectively tailor interventions and practical resources for services, practitioners, people with intellectual disabilities and their carers / support staff.
• Further clinical and cost-effectiveness research studies of evidence-based multicomponent weight management interventions for people with intellectual disabilities are needed – including carer-involved or carer-led interventions, and research into the wider barriers and facilitators to weight management experienced by people with intellectual disabilities.
What next?
This PhD programme of research was quoted as a case study of good practice in the NIHR’s `Better Health for All’ review (2020):
https://content.nihr.ac.uk/nihrdc/themedreview-04326-BCAHFA/Better-Health_Care-For-FINALWEB.pdf
THESIS: Doherty, Alison Jayne (2018) The tailoring and implementation of evidence-based multi-component weight management interventions for adults with intellectual disabilities who are obese: a whole systems approach. Doctoral thesis, University of Central Lancashire. http://clok.uclan.ac.uk/23941/
PhD linked publications:
• Doherty, A.J., Jones, S.P., Chauhan, U., and Gibson, J.M.E., (2018) An integrative review of multicomponent weight management interventions for adults with intellectual difficulties. Journal of Applied Research in Intellectual Disabilities. 31 (S1). pp. 39-51
• Doherty, A., Jones, S., Chauhan, U., & Gibson, J. (2018) Eating well, living well and weight management: A co-produced semi-qualitative study of barriers and facilitators experienced by adults with intellectual disabilities. Journal of Intellectual Disabilities. https://doi.org/10.1177/1744629518773938
• Doherty, A.J., Jones, S.P., Chauhan, U., and Gibson, J.M.E., (2019) Health care practitioners’ views and experiences of barriers and facilitators to weight management interventions for adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities. 32 (5). pp. 1067-1077. ISSN 1360-2322
• Taggart, L., Doherty, A.J., Chauhan, U. and Hassiotis, A. (2021), An exploration of lifestyle/obesity programmes for adults with intellectual disabilities through a realist lens: Impact of a ‘context, mechanism and outcome’ evaluation. J Appl Res Intellect Disabil, 34: 578-593. https://doi.org/10.1111/jar.12826
Lancashire Research Institute for Global Health and Wellbeing (LIFE) funding was secured in 2018 to explore issues further and the research has included the following co-produced publications:
• Doherty AJ, Atherton H, Boland P, Hastings R, Hives L, Hood K, James-Jenkinson L, Leavey R, Randell E, Reed J, Taggart L, Wilson N, & Chauhan U. Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: An integrative review. BJGP Open, 2020;1-14 https://doi.org/10.3399/bjgpopen20X101030
• Doherty AJ. (2020) Improving healthcare for people with learning disabilities, autism or both: a co-produced research project. Community Living Magazine. 33(2): 24-25.
This project was led by Dr. Alison Jane Doherty a Research Fellow from the University of Central Lancashire and supported by the National Institute for Health Research Applied Research Collaboration North West Coast (NIHR ARC NWC). Alison is also ARC NWC MIDAS Theme Manager. Graphics for this case study were created by Paul Boland, MSc., a Research Assistant from the University of Central Lancashire and member of the MIDAS team (Evidence Synthesis) with icons made by Vitaly Gorbachev from www.flaticon.com
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