Inclusion under the Mental Capacity Act (2005): A review of research policy guidance and governance structures in England and Wales.
Code of Practice
Mental Capacity Act
capacity
communication
consent
ethics
Journal
Health expectations : an international journal of public participation in health care and health policy
ISSN: 1369-7625
Titre abrégé: Health Expect
Pays: England
ID NLM: 9815926
Informations de publication
Date de publication:
02 2021
02 2021
Historique:
accepted:
08
11
2020
pubmed:
28
11
2020
medline:
19
8
2021
entrez:
27
11
2020
Statut:
ppublish
Résumé
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. 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. 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. 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. People with communication and understanding difficulties and carers participated in a working group to explore, discuss and interpret the findings.
Identifiants
pubmed: 33245186
doi: 10.1111/hex.13165
pmc: PMC7879554
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Review
Langues
eng
Sous-ensembles de citation
IM
Pagination
152-164Informations de copyright
© 2020 The Authors. Health Expectations published by John Wiley & Sons Ltd.
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