Involving people with learning disabilities in research: issues and possibilities.
Advances in the social position of people with learning disabilities have led to a situation where research and evaluation studies are increasingly required to include the views and opinions of people with learning disabilities. One key outcome of this shift is that some of the major funding bodies now insist on the inclusion of people with learning disabilities as a condition of research funding. This has produced new possibilities and new challenges for researchers, and it has real consequences for people working in health and social care. The present paper sets out to explore some of the developments and challenges in research with people with learning disabilities. The author provides a selective overview of developments with the aim of demonstrating the richness, ingenuity and potential of research involving people with learning disabilities. The paper is divided into three broad sections that focus on: (1) the ethics and philosophy of participatory research; (2) the methodologies employed at particular points in the research process that are designed to ensure the involvement of participants in research; and (3) building capacity in participatory research as a precondition to the further development of this approach. An investment in capacity would enable this approach to move into the mainstream of research activity involving people with learning disabilities.
School of Social Work and Primary Care, Faculty of Health and Social Work, University of Plymouth, Plymouth, UK. anthony.gilbert@plymouth.ac.uk
Tony
T
Gilbert
D032984:Ethics, Research; D006801:Humans; D007859:Learning Disabilities; D018579:Patient Selection / Q000941:ethics*; D019989:Persons with Intellectual Disabilities; D011369:Professional-Patient Relations; D012947:Social Work / Q000941:ethics*; D013222:State Medicine; D006113:United Kingdom