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.

People with learning disabilities, carers and care workers awareness of health risks and implications for primary care.

BACKGROUND: People with learning disabilities have become increasingly exposed to health risk with the move to community living. Yet, health promotion is poorly developed with a heavy reliance on primary care. OBJECTIVES: To elicit the perceptions of people with learning disabilities, carers and care workers regarding risk factors associated with cardiac disease. METHODS: A qualitative approach was adopted incorporating semi-structured interviews based on vignettes. Twenty people with mild learning disabilities, 10 carers and 10 care workers were recruited. Data were analysed using Miles and Huberman's five-fold process. RESULTS: In total, 29 women and 11 men were interviewed. A range of health risks was identified with different patterns across groups. There were common concerns around diet. Approximately 50% of participants also had worries regarding 'excessive computer usage', often related to physical inactivity, and a similar proportion identified social isolation as a risk. The importance of safeguarding personal autonomy was stressed in all three groups. CONCLUSION: We demonstrated the feasibility of engaging with people with mild learning disabilities regarding health improvement. Participants recognized not only risks but also the subtle interplay of different factors, reflecting a grasp of the complexity of health promotion. Approaches within primary care to health improvement need to acknowledge this level of awareness.

Stakeholders' views on measuring outcomes for people with learning disabilities.

What works and how do we know? These are recurring questions for health and social care professionals, although mediated through differing philosophies and historical perspectives. The aims of the study reported here were to discover views of managers and commissioners of services for people with learning disabilities in Scotland regarding (a) current approaches to service evaluation (as an indication of what is to be measured) and (b) healthcare outcome measurement (as an indication of preferences regarding how this should be measured). A postal questionnaire was used to survey 94 stakeholders from the NHS, Local Authorities, and non-statutory organisations across Scotland. Respondents' views were sought on current approaches to service evaluation within learning disabilities; outcome measurement; appropriateness of specified methods of measuring health outcomes; desired future methods of outcome measurement within learning disabilities; and service user involvement in care. A 77% (73/94) response rate to the questionnaire was achieved. Different methods of service evaluation were used by different stakeholders. Staff appraisal was the most frequently identified method (used by 85% of respondents). Specific outcome measures were used by 32% of respondents although there were differences of opinion as to what constitutes specific outcome measures. Overall there was strong support for goal-setting and reviewing (83%) and individualised outcome measures (75%) as appropriate methods for use with people with learning disabilities. The hypothetical question asking what outcome measures should be introduced for this client group had by far the lowest response rate (51/73). The overwhelming majority of all respondents, 68 (92%), reported user involvement in their service. Staff ambivalence to outcome measurement was evident in the research and respondents highlighted the complexity and multidimensional nature of outcomes for this service user group. Managers recognised that outcome measurement was expected but were uncertain how to go about it.