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Inclusion under the Mental Capacity Act (2005): A review of research policy guidance and governance structures in England and Wales
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 document...
Autores principales: | , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
John Wiley and Sons Inc.
2020
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7879554/ https://www.ncbi.nlm.nih.gov/pubmed/33245186 http://dx.doi.org/10.1111/hex.13165 |
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author | Ryan, Hayley Heywood, Rob Jimoh, Oluseyi Killett, Anne Langdon, Peter E Shiggins, Ciara Bunning, Karen |
author_facet | Ryan, Hayley Heywood, Rob Jimoh, Oluseyi Killett, Anne Langdon, Peter E Shiggins, Ciara Bunning, Karen |
author_sort | Ryan, Hayley |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-7879554 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | John Wiley and Sons Inc. |
record_format | MEDLINE/PubMed |
spelling | pubmed-78795542021-02-18 Inclusion under the Mental Capacity Act (2005): A review of research policy guidance and governance structures in England and Wales Ryan, Hayley Heywood, Rob Jimoh, Oluseyi Killett, Anne Langdon, Peter E Shiggins, Ciara Bunning, Karen Health Expect Original Research Papers 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. John Wiley and Sons Inc. 2020-11-27 2021-02 /pmc/articles/PMC7879554/ /pubmed/33245186 http://dx.doi.org/10.1111/hex.13165 Text en © 2020 The Authors. Health Expectations published by John Wiley & Sons Ltd. This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. |
spellingShingle | Original Research Papers Ryan, Hayley Heywood, Rob Jimoh, Oluseyi Killett, Anne Langdon, Peter E Shiggins, Ciara Bunning, Karen Inclusion under the Mental Capacity Act (2005): A review of research policy guidance and governance structures in England and Wales |
title | Inclusion under the Mental Capacity Act (2005): A review of research policy guidance and governance structures in England and Wales |
title_full | Inclusion under the Mental Capacity Act (2005): A review of research policy guidance and governance structures in England and Wales |
title_fullStr | Inclusion under the Mental Capacity Act (2005): A review of research policy guidance and governance structures in England and Wales |
title_full_unstemmed | Inclusion under the Mental Capacity Act (2005): A review of research policy guidance and governance structures in England and Wales |
title_short | Inclusion under the Mental Capacity Act (2005): A review of research policy guidance and governance structures in England and Wales |
title_sort | inclusion under the mental capacity act (2005): a review of research policy guidance and governance structures in england and wales |
topic | Original Research Papers |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7879554/ https://www.ncbi.nlm.nih.gov/pubmed/33245186 http://dx.doi.org/10.1111/hex.13165 |
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