Development of a supported self-management intervention for adults with type 2 diabetes and a learning disability

BACKGROUND: Although supported self-management is a well-recognised part of chronic disease management, it has not been routinely used as part of healthcare for adults with a learning disability. We developed an intervention for adults with a mild or moderate learning disability and type 2 diabetes, building on the principles of supported self-management with reasonable adjustments made for the target population. METHODS: In five steps, we: 1. Clarified the principles of supported self-management as reported in the published literature. 2. Identified the barriers to effective self-management of type 2 diabetes in adults with a learning disability. 3. Reviewed existing materials that aim to support self-management of diabetes for people with a learning disability. 4. Synthesised the outputs from the first three phases and identified elements of supported self-management that were (a) most relevant to the needs of our target population and (b) most likely to be acceptable and useful to them. 5. Implemented and field tested the intervention. RESULTS: The final intervention had four standardised components: (1) establishing the participant’s daily routines and lifestyle, (2) identifying supporters and their roles, (3) using this information to inform setting realistic goals and providing materials to the patient and supporter to help them be achieved and (4) monitoring progress against goals. Of 41 people randomised in a feasibility RCT, thirty five (85%) completed the intervention sessions, with over three quarters of all participants (78%) attending at least three sessions. Twenty-three out of 40 (58%) participants were deemed to be very engaged with the sessions and 12/40 (30%) with the materials; 30 (73%) participants had another person present with them during at least one of their sessions; 15/41 (37%) were reported to have a very engaged main supporter, and 18/41 (44%) had a different person who was not their main supporter but who was engaged in the intervention implementation. CONCLUSIONS: The intervention was feasible to deliver and, as judged by participation and engagement, acceptable to participants and those who supported them. TRIAL REGISTRATION: Current Controlled Trials ISRCTN41897033 (registered 21/01/2013) ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s40814-018-0291-7) contains supplementary material, which is available to authorized users.