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Abstract
Background Participatory action research (PAR) offers potential for people with an intellectual disability to have an active voice in service provision. However, ensuring their meaningful engagement is not without challenges. Guided by PAR, a recent project to develop a quality of life tool provided learning opportunities for the lead researchers. This paper addresses 3 issues raised by Ramcharan, Grant, and Flynn (2004) in relation to participation of people with intellectual disability in research.
Method Informed by reflective practice, this paper draws on a combination of field notes and written reports to critically examine the 3 issues related to effective participation.
Results Although the project achieved its goal of people with intellectual disability authoring a quality of life tool, there was variation in participants' contribution. With both data collection and analysis, prior experience and confidence influenced the participation of co-researchers. The financial and the practical support of the contracting organisation were crucial to enabling people to take part.
Conclusions For researchers interested in PAR, planning well whilst maintaining flexibility would appear to be key to achieving maximum participation.
Acknowledgements
The authors are grateful to IHC/IDEA Services, New Zealand, who were the funders of the project. We would also like to thank our co-researchers, the participants, and the many people who provided the additional support individuals required to participate in this project.
Conflict of interest: The authors of this paper are not affiliated to the contractors.