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Reflections on a participatory project: the rewards and challenges for the lead researchers
- Authors:
- CONDER Jennifer, MILNER Paul, MIRFIN-VEITCH Brigit
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 36(1), March 2011, pp.39-48.
- Publisher:
- Taylor and Francis
Participatory research offers potential for people with an intellectual disability to have an active voice in service provision. Using the example of a project to develop a quality of life tool in New Zealand, this paper aims to address 3 issues raised in a 2004 article by Ramcharan, Grant, and Flynn in relation to participation of people with an intellectual disability in research: lack of detail about level of participation, how people have been supported in their participation, and the extent to which participation in the project has changed the lives of the participants. The article includes a brief overview of the project, and presents a discussion drawn from reflections on the research process by the researchers. The researchers worked with people with an intellectual disability who were service users as co-researchers or participants in choosing indicators of quality of life. The article discusses the participation of the 6 co-researchers and 95 participants, the support provided, and whether co-researchers' and participants' lives were changed. The authors note that although the project achieved its goal of people with intellectual disability authoring a quality of life tool, there was a variation in participants' contribution, and the financial and practical support of the contracting organisation was crucial to enabling people to take part.