Abstract
While much attention and emphasis have been given to the role and value of advisory groups in social science research, less has been published on the experiences of those involved in such collaborative efforts. This article reflects on the experiences of academics, collaborators and self-advocacy experts who formed an advisory group for a research project focused on people with learning disabilities’ experiences of renting their own homes. Our paper describes the collaboration, how it changed because of Covid and because of changing relationships, and what worked well and what was challenging. This is in part because these more transparent accounts of working together are sometimes missing from research. We discuss issues relating to bureaucratic research systems which are largely inaccessible to people with learning disabilities and how we approached these. We also highlight the joys and benefits of the research approach that we adopted. In the paper, we talk about the joys of working together but also the challenging and more difficult aspects of inclusive research.
| Original language | English |
|---|---|
| Article number | 79 |
| Journal | Research Involvement and Engagement |
| Volume | 9 |
| Issue number | 1 |
| DOIs |
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| Publication status | Published - 9 Sept 2023 |
Bibliographical note
Funding Information:We are grateful to NIHR School for Social Care Research who funded this project. The views expressed in this publication are those of the authors and not necessarily those of the NIHR School for Social Care Research or the Department of Health and Social Care, NIHR or NHS.
Funding Information:
In the last two decades, increasing emphasis has been placed on the meaningful engagement of the public in health and social care research [, ] and is now encouraged or required by organisations that fund research. For transparency, this is the case in our research which was funded by the National Institute for Health and Care Research, School for Social Care Research (NIHR SSCR) which has long emphasised the importance of public involvement in its funded research projects. We also know that debates about who is involved in research are contentious. Well established narratives include whether inclusion in research is tokenistic; the real differences between participatory research and research which is organised more radically in terms of how power is organised; the co-opting of terms/language around coproduction in particular; the lack of clarity and interchangeable use of terms to describe what actually happens when different people collaborate in research.
Publisher Copyright:
© 2023, BioMed Central Ltd., part of Springer Nature.
Research Groups and Themes
- SPS Norah Fry Centre for Disability Studies
Keywords
- Learning disabilities
- advisory group
- Online research
- inclusive research