Addressing barriers to participation in a commercial weight management programme faced by people with intellectual disabilities
Croot, L., Rimmer, M., Salway, S., Hatton, C., Dowse, E., Lavin, J., Bennert, S. R., Harris, J. and O’Cathain, A. 2018. Adjusting a mainstream weight management intervention for people with intellectual disabilities: a user centred approach. International Journal of Equity in Health, 17: 159.
This case study illustrates how a clear theoretical framework on the structural causes of health inequalities and involvement of lived experience experts can shape the research questions, study design and implementation which as a result, impact the relevance of recommendations for actions on health inequalities.
This is a mixed-method, user-centred, feasibility study. It aimed to generate and test adjustments to a commercial, weight management programme (Slimming World) in order to improve the accessibility, acceptability and relevance for people with intellectual disabilities who are more likely to be categorised as obese relative to people without intellectual disabilities.
Adopting a social model of disability, the research questions focused on exploring how the barriers to accessibility, acceptability and feasibility arising from mainstream, normative social arrangements were operating within the slimming programme, identifying and implementing potential solutions to these barriers, and testing whether access improved.
This study demonstrates the value of tapping directly into service user insights and experiences and the knowledge, and experience of service providers. The first phase comprised a qualitative design. This used interviews and focus groups, adjusted to the needs of participants, in order to identify barriers preventing equitable participation and to “capture experiential knowledge about what does and does not work well” to improve access. These involved people with learning disabilities, their carers, and people running the slimming groups.
The second phase involved a feasibility study testing the feasibility and acceptability of “reasonable adjustments” to the slimming programme. These included simplified and easy read information sources, training for service providers, and establishing mechanisms to engage carers. A small sample of people with learning disabilities participated in a slimming group that implemented these adjustments for eight weeks. Data were collected from a routine recording of weight, and through semi-structured interviews again with services users and providers.
The study’s steering group included four people with intellectual disabilities. The paper does not include a detailed account of how the steering group shaped the research process. However, the authors note that the steering group advised on all aspects of the study: the research design and the conduct of the study regarding the relevance and accessibility of methods and materials; discussions on the emerging findings; revisions to Slimming World materials; and comments on the implications of the findings for research and practice.
The study had a small sample size so, as the authors recognised, it was not able to consider “other axes of difference and potential disadvantage, particularly age, gender and ethnicity”. It did, however, consider both individual and structural determinants of inequalities in access to slimming support programmes, including literacy levels as well as barriers associated with different living circumstances including the availability of social support; opportunities to make dietary changes including access to healthy food; experience of supportive non-stigmatising social relationships in the group; and limits on time and money for people with learning disabilities and their carers. Finally, whilst this study focused on ways to improve the “micro-environments within services that constrain the opportunities for healthy lifestyles” available to people with learning disabilities, the authors also draw attention to the need for action on the wider structural drivers that create obesogenic environments and limit food choices in general.