Support for self-management of cardiovascular disease by people with learning disabilities

Background. Cardiovascular disease (CVD) is the second most common cause of death among people with learning disabilities (LD), and lifestyle has been linked to risk factors. With a shift towards illness prevention and self-management support, it is important to know how people with LD can be involved in this process. Objective. To elicit the perceptions of people with LD, carers and health professionals regarding supported self-management of CVD. Methods. A qualitative approach used in-depth semi-structured interviews based on vignettes with accompanying pictures. Fourteen people with LD, 11 carers/care staff and 11 health professionals were recruited and interviewed. Thematic framework analysis was used to analyse interview data. Results. In total, 11 men and 25 women were interviewed. All respondents contributed views of self-management with a wide range of opinions expressed within each participant group. Four key themes encompassed: strategies for self-management; understanding the prerequisites for self-management support; preferred supporters and challenges for self-management implementation. Facilitated service user involvement in self-management decision making was highly valued in all groups. Service users wished for co-ordinated incremental support from across agencies and individuals. Conclusions. People with LD can be effectively consulted regarding health management and their views can inform service development. Promoting joined-up support across health and social care and families will require investment in resources, education and dismantling of professional barriers.