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Ryan, Hayley, Heywood, Rob, Jimoh, Oluseyi 
ORCID: https://orcid.org/0000-0003-4296-2729, Killett, Anne ORCID: https://orcid.org/0000-0003-4080-8365, Langdon, Peter E., Shiggins, Ciara and Bunning, Karen ORCID: https://orcid.org/0000-0002-7396-9205
(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.
ISSN 1369-6513
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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: | Article |
|---|---|
| Uncontrolled Keywords: | code of practice,mental capacity act,capacity,communication,consent,ethics,public health, environmental and occupational health,sdg 3 - good health and well-being ,/dk/atira/pure/subjectarea/asjc/2700/2739 |
| Faculty \ School: | Faculty of Medicine and Health Sciences > Norwich Medical School Faculty of Social Sciences > School of Law Faculty of Medicine and Health Sciences > School of Health Sciences |
| UEA Research Groups: | Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life Faculty of Medicine and Health Sciences > Research Groups > Rehabilitation Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health Faculty of Medicine and Health Sciences > Research Groups > UEA Hydrate Group |
| Related URLs: | |
| Depositing User: | LivePure Connector |
| Date Deposited: | 12 Nov 2020 01:11 |
| Last Modified: | 25 Sep 2024 15:09 |
| URI: | https://ueaeprints.uea.ac.uk/id/eprint/77659 |
| DOI: | 10.1111/hex.13165 |
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