Determining Research Questions on Health Risks by People with Learning Disabilities, Carers and Care-Workers

Young & Chesson (2007) full text summary PDF

For which topic were research priorities identified?

health risks of people with learning disabilities

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

Inclusion of people with learning disabilities in research regarding health improvement/health promotion has been a neglected area, even though people with learning disabilities form a sizeable ‘minority' group for whom it is realistic to plan a health promotion strategy. Currently little is known about people with learning disabilities' and carers' perceptions of health and illness.

What was the objective?

to produce a research proposal for external funding based on user/carer views of research priorities

What was the outcome?

a ranking list of 6 research questions

How long did the research prioritization take?

No information provided.

Which methods were used to identify research priorities?

focus group; interview

How were the priorities for research identified exactly?

Step 1: interviews: participants were asked about lifestyle factors which could lead to future risk of disease and underlying signs and symptoms of disease at an early stage of illness, which if undetected could lead to future serious health problems, participants were asked to identify research questions. Step 2: data processing: content analysis, 78 questions were identified. Step 3: 3 focus groups: separately for users, carers and care-staff, participants were asked to validate the data from the interviews, the six emergent research questions from interviews were presented, participants were asked to discuss and prioritize these research questions, participants voted on questions with 3 stickers, 1 question emerged as participants' overall top priority

Which stakeholders took part?

Adults (aged 16 or over) with mild learning disabilities, family (unpaid) carers and care-workers. Interviews: 40 participants: 20 service users, 10 carers, 10 care staff. Focus group: 27 participants: 5 service users, 7 carers, 15 staff.

How were stakeholders recruited?

Carer and care-worker participants were recruited in their own right and were not supporters of the service user participants in this study. A convenience sample of 20 adults with mild learning disabilities was recruited through community service providers such as local authority day centres and residential supported living accommodation. Convenience samples of 10 carers and 10 care-workers were recruited through social work care providers, Aberdeen's VSA Carers Centre, and voluntary and statutory care agencies.

Were stakeholders actively involved or did they just participate?

Stakeholders not only participated but were also actively involved in the research prioritization process: They were part of an advisory board. The advisory board consisted of the article's authors. Addionally,, there was representation from NHS Grampian, the City of Aberdeen and Aberdeenshire Councils, and the local Health Council but no service user representation (because at the beginning of the project meaningful contact had not been developed with individuals who may have been interested in this role). Members guided the project.