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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

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Official URL: https://doi.org/10.1111/hex.13165

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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
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
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:
DateEvent
February 2021Published
27 November 2020Available
8 November 2020Accepted
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
RIOXX Funder/Project Grant:
Project/Grant IDRIOXX Funder NameFunder ID
UNSPECIFIEDNuffield Foundationhttp://dx.doi.org/10.13039/501100000279
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