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

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

Research output: Contribution to journalArticlepeer-review

26 Citations (SciVal)

Abstract

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
Pages (from-to)1031-1057
Number of pages27
JournalDisability & Society
Volume35
Issue number7
Early online date18 Oct 2019
DOIs
Publication statusPublished - 31 Dec 2020

Bibliographical note

Funding Information:
This article reports on a systematic study of participatory research practice involving people identified with sensory impairments and/or intellectual impairments. This review was undertaken as part of ARCHES, an access to Heritage project funded by Horizon 2020. ARCHES involved research groups that included participants who have a diverse range of access preferences. These preferences are frequently associated with the labels of sensory impairments and intellectual impairments. At the outset of the project a broad label was proposed, “people who experience differences and difficulties associated with perception, memory, cognition and communication”; not all the ARCHES participants wished to be defined by this or any other label however. There was a collective agreement early in the project that it would be far more useful in an access to Heritage project to refer to our access preferences. Our use of the deficit labels within this paper exemplifies the manner in which our commitment to voice is compromised when we move into another arena, as does the inaccessibility of some of language in this paper.

Funding Information:
The project leading to this application has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 693229.

Keywords

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

ASJC Scopus subject areas

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

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