The while of participation: A systematic review of participatory research involving people with sensory impairments and/or intellectual impairments

Jonathan Rix, Helena Garcia Carrisoza, Jane Seale, Kieron Sheehy, Simon Hayhoe

Research output: Contribution to journalArticle

1 Citation (Scopus)


This paper reports on the first systematic review of literature associated with participatory research involving people identified with sensory impairments and/or intellectual impairments. It was initiated as part of ARCHES, an European Union-funded heritage project. The review sought to examine processes and activities used for organising participatory research involving people identified with sensory and/or intellectual impairments. 54 papers were included, involving studies from 14 countries and varying numbers of participants across different time scales. Insights were gained into use of advisory groups, organisation and support, collecting and analysing data, sharing findings and activity types. Emergent themes enabled an identification of the while of participation. The while represents the tensions, outcomes and component parts which are evident within the multiple moments that span an experience of participatory research. Participation is not about types of activity but how any activity is undertaken.
Original languageEnglish
JournalDisability & Society
Early online date18 Oct 2019
Publication statusE-pub ahead of print - 18 Oct 2019


  • Participatory research
  • systematic review
  • research processes
  • participatory activities

ASJC Scopus subject areas

  • Health(social science)
  • Social Sciences(all)
  • Health Professions(all)


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