Research With Disabled People: A Health Action Research Project With People With Learning Difficulties

Abstract

In 2015, I worked for 10 months on a research project that had the ambitious aim of improving the experiences and treatment of people with learning difficulties using health services. Initiated by some senior health service staff, the project took the form of action research and aimed to stimulate an increase in service user-led quality checking of health services as a mechanism for service improvement. The project also set out to involve people with learning disabilities on an equal basis from the start. Involving a partnership between my university, a voluntary sector organization, and part of the National Health Service, I co-worked on an equal basis with a colleague who has learning difficulties and was located with the voluntary sector organization rather than university. In this case, I will discuss the part of the project that involved interviewing quality checkers with learning difficulties and their supporters and working with them and health professionals to develop the tools. I will argue for the importance of involving disabled people in research in a way that addresses power imbalances but will also discuss the very real challenges of doing this. By using examples of issues faced during the course of the project, I will explain some of the pitfalls, tensions, contributions, and successes likely to face.

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