Despite the rhetoric of involvement of people with learning disabilities in health care there is a dearth of research which examines the extent to which service users are included in evaluating their own care. This paper describes a study of methods for enabling people with learning disabilities and complex health needs to comment on the specialist inpatient care they received. Six service users consented to take part in interviews using analogue scales and photographs. The participants were able to engage in all elements of the interviews even though inclusion was more challenging because of additional health problems such as manic depression and paranoid psychosis. The suitability of research tools and approaches are discussed and barriers to inclusion identified. In this investigation a gap emerged between government policy of inclusion for everyone, and the realities of frontline practice where involvement was not achieved for some users with severe/profound disabilities. The study points to implications for increased resources, education and training if meaningful user involvement is to become established for individuals within routine practice.
In this article, one approach to measuring therapeutic impact — Goal Attainment Scaling (GAS) — is discussed. The authors forward the case for GAS based on their own research regarding occupational therapy with children with learning disabilities. GAS is described and the factors relating to the setting of goals are examined. The main advantages are identified and GAS is seen to have benefits beyond those relating specifically to occupational therapy. The implications for multidisciplinary teamworking are examined and, in particular, it is asserted that co-workers may acquire, through the goal-setting process, realistic expectations of clients. The audit of therapeutic goals is seen to have the potential to inform decision making regarding treatment options. In conclusion, GAS is advocated as a particularly appropriate evaluative tool for the 1990s.
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.
Accessible summary• We did a study to look at the way research questions were developed by people with learning disabilities, their carers and care-workers. • Everyone thought of questions for helping people with learning disabilities be healthy. • There were six main research questions. Everyone voted for their top question.• The study showed that people with learning disabilities and carers can describe research questions that they feel are important. Also they can decide which ones are the most important to study.
SummaryHere we describe the process by which research questions were developed for reducing health risks for people with learning disabilities. A participatory approach was used to give service users and carers a clear voice in deciding questions, thereby setting the research agenda. Audio-taped interviews and focus groups were used. Forty people (20 service users, 10 carers, 10 care-workers) were recruited and gave consent for interview. Interviews incorporated scenarios and these were used to describe two different types of health risks (i) those relating to lifestyle, and (ii) those associated with unrecognized illness. Participants were invited to specify a research question for each scenario. A total of 78 questions were identified, and from these, six key themes emerged. The themes were validated using three separate focus groups (service users, carers, care-workers). From this process six final questions encompassing participants' key research concerns were produced. Questions were resubmitted to participants for prioritizing, using a postal voting system (75% response rate). The research clearly demonstrates that people with learning disabilities and carers can identify and prioritize research questions they consider significant for improving health.
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.
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