| Title: |
Co-Producing Ethics Guidelines Together with People with Learning Disabilities |
| Language: |
English |
| Authors: |
Mary Bottomley; Jodie Bradley; Lisa Clark; Bryan Collis (ORCID 0000-0001-8725-3649); Bojana Daw Srdanovic (ORCID 0009-0003-3911-0186); Victoria Farnsworth; Annie Ferguson; Dan Goodley (ORCID 0000-0002-0660-5671); Andrew Fox; Nikita K. Hayden (ORCID 0000-0003-1104-3885); Charlotte Lawthom; Rebecca Lawthom (ORCID 0000-0003-2625-3463); Claudia Magwood; Robert McLean; Ian Middleton; Alison Owen; Matty Prothero; Simon Rice; Simon Richards; Katherine Runswick-Cole (ORCID 0000-0001-9658-9718); Kelly Scargill; Rohit Shankar (ORCID 0000-0002-1183-6933); Toni Ann Wood |
| Source: |
British Journal of Learning Disabilities. 2024 52(4):611-632. |
| Availability: |
Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us |
| Peer Reviewed: |
Y |
| Page Count: |
22 |
| Publication Date: |
2024 |
| Document Type: |
Journal Articles; Reports - Research |
| Education Level: |
Higher Education; Postsecondary Education |
| Descriptors: |
Ethics; Learning Disabilities; Guidelines; Researchers; Disabilities; Experimenter Characteristics; Health Services; Participatory Research; Research; Comprehension; Informed Consent; Research Methodology; Participant Characteristics; Clinics; Universities; Foreign Countries |
| Geographic Terms: |
United Kingdom (Wales); United Kingdom (England) |
| DOI: |
10.1111/bld.12590 |
| ISSN: |
1354-4187; 1468-3156 |
| 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). |
| Abstractor: |
As Provided |
| Entry Date: |
2024 |
| Accession Number: |
EJ1446913 |
| Database: |
ERIC |