Abstract:
Aims: This research aimed to find out what 12 research teams, funded by the Department of Health as part of the Learning Disability Research Initiative, had done to actively involve people with learning difficulties in their research. The research and management was undertaken by a team of people with learning difficulties.
Methods: Team members undertook semi-structured interviews with the research teams and with people with learning difficulties who had been involved in the research. They also kept diaries to reflect on their experience as researchers.
Findings/recommendations: Of the 12 research projects, only two employed people with learning difficulties. The report identifies a number of barriers to the employment of people with learning difficulties as researchers.
All but one of the projects had advisory groups which included people with learning difficulties. Some of the advisory groups were more successful than others in effectively involving these people.
The authors of this report found examples of "really excellent involvement" and of accessible information. But they also found that people with learning difficulties were usually involved in research in limited, traditional and unimaginative ways. To involve people more effectively, they conclude that research has to be:
- done over a longer period
- resourced effectively - in terms of money, support and teamworking.
Reflecting on doing the research, the authors remarked that being user researchers improveed the quality of the project by covering different questions and getting different information. However, they identify two issues for people with learning difficulties acting as interviewers:
- they were concerned that they might know someone they interviewed
- they might get their own experience mixed up with that of the people they were intervewing.
The authors reflect that they have learned a lot and gained from their involvement, even though at times it was difficult. They call for more opportunities for people with learning difficulties to do research.
External link: The following links will take you to information on this entry on an external website. INVOLVE is not responsible for the content or the reliability of the external websites. Link to full report
Related entry: none currently available
Categories: health
public health
social care
Designing research
Undertaking research
impact on research
impact on service users involved
nature and extent of public involvement in research
impact of public involvement
reflecting on public involvement in research
report
Date Entered: 2007/04/03
Date Edited: 2013/07/08
Additional Info:
