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Inclusion under the Mental Capacity Act (2005) : a review of research policy guidance and governance structures in England and Wales
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Ryan, Hayley, Heywood, Rob, Killett, Anne, Langdon, Peter E., Shiggins, Ciara and Bunning, Karen (2021) Inclusion under the Mental Capacity Act (2005) : a review of research policy guidance and governance structures in England and Wales. Health Expectations, 24 (1). pp. 152-164. doi:10.1111/hex.13165 ISSN 1369-6513.
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Official URL: https://doi.org/10.1111/hex.13165
Abstract
Objective: To investigate how people with communication and understanding difficulties, associated with conditions such as dementia, autism and intellectual disability, are represented in research guidance supplementary to the Mental Capacity Act (MCA: 2005) in England and Wales.
Methods: A documentary survey was conducted. The sample comprised the MCA Code of Practice (CoP: 2007) and 14 multi-authored advisory documents that were publicly available on the Health Research Authority website. Textual review of key words was conducted followed by summative content analysis.
Results: Representation of people with communication and understanding difficulties was confined to procedural information and position statements that focused mainly on risk management and protection. Whilst a need to engage potential participants was recognised, guidance provided was imprecise.
Conclusions: Tensions exist between the protection versus empowerment of people with communication and understanding difficulties in research. The development of structured, evidence-based guidance is indicated.
Patient or public contribution: People with communication and understanding difficulties and carers participated in a working group to explore, discuss and interpret the findings.
| Item Type: | Journal Article | ||||||||
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| Subjects: | B Philosophy. Psychology. Religion > BF Psychology B Philosophy. Psychology. Religion > BJ Ethics K Law [Moys] > KL Common Law, General R Medicine > RC Internal medicine |
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| Divisions: | Faculty of Social Sciences > Centre for Educational Development, Appraisal and Research (CEDAR) | ||||||||
| Library of Congress Subject Headings (LCSH): | Great Britain. Mental Capacity Act 2005., Capacity and disability -- Great Britain, Mental health laws -- Great Britain, Mental health services -- Great Britain, Mental health services -- Practice, Insanity (Law) -- Great Britain, Informed consent (Medical law) , Content (Psychology) , Respect for persons | ||||||||
| Journal or Publication Title: | Health Expectations | ||||||||
| Publisher: | Blackwell | ||||||||
| ISSN: | 1369-6513 | ||||||||
| Official Date: | February 2021 | ||||||||
| Dates: |
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| Volume: | 24 | ||||||||
| Number: | 1 | ||||||||
| Page Range: | pp. 152-164 | ||||||||
| DOI: | 10.1111/hex.13165 | ||||||||
| Status: | Peer Reviewed | ||||||||
| Publication Status: | Published | ||||||||
| Access rights to Published version: | Open Access (Creative Commons) | ||||||||
| Date of first compliant deposit: | 17 November 2020 | ||||||||
| Date of first compliant Open Access: | 18 November 2020 | ||||||||
| RIOXX Funder/Project Grant: |
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