Inclusion of adults with conditions that have the potential to affect capacity and/or communication in research: triangulation from a mixed methods study of current practice and values across multiple stakeholders

Killett, Anne ORCID: https://orcid.org/0000-0003-4080-8365, Langdon, Peter E., Ryan, Hayley, Shiggins, Ciara, Heywood, Rob, Jimoh, Oluseyi F. ORCID: https://orcid.org/0000-0003-4296-2729, Redley, Marcus ORCID: https://orcid.org/0000-0001-8866-7990 and Bunning, Karen ORCID: https://orcid.org/0000-0002-7396-9205 (2023) Inclusion of adults with conditions that have the potential to affect capacity and/or communication in research: triangulation from a mixed methods study of current practice and values across multiple stakeholders. BMJ Open, 13 (4). ISSN 2044-6055

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Abstract

Objectives We aimed to: (A) describe researcher decision-making when including or excluding adults with conditions that have the potential to affect capacity and/or communication in research and (B) explore the underlying values and reasoning of stakeholders in research which falls under the provisions of the Mental Capacity Act, 2005. Design The mixed-methods design included semistructured interviews with adults with conditions that have the potential to affect capacity and/or communication, supporters, researchers, research ethics committee members and an online survey with researchers. Triangulation was used to integrate the data and examine the complementarity of the findings. Setting England and Wales. Participants There were 61 participants who took part in semistructured interviews, of which 39 were adults with conditions with potential to affect capacity and/or communication, 6 were in support roles for adults with conditions with potential to affect capacity and/or communication (including family members and professionals in advocacy organisations), 8 were members of research ethics committees flagged under the Mental Capacity Act to review research where there could be issues of mental capacity and 8 were researchers with experience of working with adults with conditions that have the potential to affect capacity and/or communication. The online survey had 128 participants, researchers with experience of working with adults with conditions that have the potential to affect capacity and/or communication. Results All stakeholders were supportive of the genuine inclusion of adults with conditions that have the potential to affect capacity and/or communication in research, and exclusion was seen as a form of discrimination. Many researchers were daunted by meeting the threshold within the legislation for including participants who may lack capacity. Conclusion Further training, expertise and resources are required to promote the successful inclusion in research of adults with conditions that have the potential to affect capacity and/or communication.

Item Type: Article
Additional Information: Funding information: Funding for the project written up in this manuscript came from the Nuffield Foundation, grant titled 'Development of an assent-based process for the inclusion of adults with impairments of capacity and/or communication in ethically sound research'. PL has funding from NIHR129804 'Behavioural interventions to treat anxiety in adults with autism and moderate to severe intellectual disabilities’. CS' post-doctoral positions have been supported by NHMRC Centre of Research Excellence grant 1153236 and through the Queensland Aphasia Research Centre. KB and AK have received funding from the Health Research Authority for training of Research Ethics Committee members in England and Wales.
Uncontrolled Keywords: research design,healthcare disparities,stroke,dementia,mental health,sdg 3 - good health and well-being,3* ,/dk/atira/pure/sustainabledevelopmentgoals/good_health_and_well_being
Faculty \ School: Faculty of Medicine and Health Sciences > School of Health Sciences
Faculty of Medicine and Health Sciences > Norwich Medical School
Faculty of Social Sciences > School of Law
UEA Research Groups: Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life
Faculty of Medicine and Health Sciences > Research Groups > Rehabilitation
Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health
Related URLs:
Depositing User: LivePure Connector
Date Deposited: 20 Apr 2023 08:35
Last Modified: 12 Jan 2024 01:39
URI: https://ueaeprints.uea.ac.uk/id/eprint/91846
DOI: 10.1136/bmjopen-2022-068366

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