title: Reflections on a participatory project: the rewards and challenges for the lead researchers.
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.
  
  
  METHODS
  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.
authors.affiliation: Donald Beasley Institute, Dunedin, New Zealand. jconder@donaldbeasley.org.nz
authors.forename: Jennifer
authors.initials: J
authors.lastname: Conder
authors.forename: Paul
authors.initials: P
authors.lastname: Milner
authors.forename: Brigit
authors.initials: B
authors.lastname: Mirfin-Veitch
mesh_terms: D055812:Community-Based Participatory Research / Q000379:methods* / Q000458:organization & administration; D005260:Female; D017144:Focus Groups; D006302:Health Services Research / Q000458:organization & administration*; D006801:Humans; D008607:Intellectual Disability; D008297:Male; D009520:New Zealand; D010865:Pilot Projects; D036301:Qualitative Research; D011788:Quality of Life; D012201:Reward; D011795:Surveys and Questionnaires