ORCID

Abstract

Background: We are a research team of clinical, academic and advocacy-based researchers with and without learning disabilities, working on the Humanising Healthcare (for people with learning disabilities) project. The project is dedicated to finding and sharing healthcare practices that enhance the lives of people with learning disabilities. As part of our ethics applications to access National Health Service study sites for fieldwork, we worked together to write guiding principles for co-producing research ethics with researchers with learning disabilities. In this paper, we introduce these Participatory Ethics Good Practice Guidelines and reflect on our collaboration. Methods: We reflect on developing the Participatory Ethics Good Practice Guidelines. These guidelines were developed during online co-production meetings with our full research team, including advocacy-based organisation researchers, clinical researchers and university researchers. We considered consent, understanding research, and understanding research methods during the development of these Guidelines. Findings: We present ten guidelines for co-producing research with people with learning disabilities. Conclusions: Our findings may be helpful to researchers with learning disabilities, university and clinical researchers, funders, and those who work in research governance (e.g., ethics committees and university research departments).

Publication Date

2024-01-01

Publication Title

British Journal of Learning Disabilities

Volume

52

Issue

4

ISSN

1354-4187

Acceptance Date

2024-03-08

Deposit Date

2024-06-25

Funding

We acknowledge the support of all researchers on the research project. In particular, we thank the following four organisations that employ our colleagues with learning disabilities: Speakup Self\u2010advocacy, Sheffield Voices, Sunderland People First and Barod. The project was funded by the Economic and Social Research Council (grant number: ES/W003406/1) and we thank them for supporting our work. Small seed funding was awarded to the University of Sheffield from Research England for the project that supported the development of these Guidelines. We also thank co\u2010investigators on the funding application for this seed funding: Barry Gibson, Esme Cleall, Liz Croot, Pirashanthie Vivekananda\u2010Schmidt, Parveen Ali and Lindsay Unwin. Humanising Healthcare Humanising Healthcare Promoting Participatory Research in Ethics Applications with Marginalised Communities

Keywords

co-production, ethics, inclusive research, intellectual disability, learning disability

First Page

611

Last Page

632

Download

Share

COinS