Inclusion under the Mental Capacity Act (2005): A review of research policy guidance and governance structures in England and Wales

Hayley Ryan; Rob Heywood; Oluseyi Jimoh; Anne Killett; Peter E. Langdon; Ciara Shiggins; Karen Bunning

doi:10.1111/hex.13165

Inclusion under the Mental Capacity Act (2005): A review of research policy guidance and governance structures in England and Wales

Hayley Ryan^*, Rob Heywood, Oluseyi Jimoh, Anne Killett, Peter E. Langdon, Ciara Shiggins, Karen Bunning^*

^*Corresponding author for this work

Social Policy and Society

Research output: Contribution to journal › Article › peer-review

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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 recognized, 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.

Original language	English
Pages (from-to)	152-164
Number of pages	13
Journal	Health Expectations
Volume	24
Issue number	1
Early online date	27 Nov 2020
DOIs	https://doi.org/10.1111/hex.13165
Publication status	Published - Feb 2021

Bibliographical note

Publisher Copyright:
© 2020 The Authors. Health Expectations published by John Wiley & Sons Ltd.

Keywords

capacity
Code of Practice
communication
consent
ethics
Mental Capacity Act

ASJC Scopus subject areas

Public Health, Environmental and Occupational Health

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1111/hex.13165Licence: Creative Commons: Attribution (CC BY)

RytanH2020InclusionFinal published version, 407 KBLicence: Creative Commons: Attribution (CC BY)

Cite this

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title = "Inclusion under the Mental Capacity Act (2005): A review of research policy guidance and governance structures in England and Wales",

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 recognized, 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.",

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AU - Shiggins, Ciara

AU - Bunning, Karen

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Inclusion under the Mental Capacity Act (2005): A review of research policy guidance and governance structures in England and Wales

Abstract

Bibliographical note

Keywords

ASJC Scopus subject areas

UN SDGs

Access to Document

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Cite this