1153374_Ryan,H_2021.pdf (397.9 kB)
Inclusion under the Mental Capacity Act (2005): a review of research policy guidance and governance structures in England and Wales
journal contribution
posted on 2021-05-03, 05:26 authored by H Ryan, R Heywood, O Jimoh, A Killett, PE Langdon, Ciara ShigginsCiara Shiggins, K BunningObjective: 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.
Funding
Project ASSENT is funded by the Nuffield Foundation.
History
Publication Date
2021-02-01Journal
Health ExpectationsVolume
24Issue
1Article Number
13165Pagination
13p. (p. 152-164)Publisher
WileyISSN
1369-6513Rights Statement
The Author reserves all moral rights over the deposited text and must be credited if any re-use occurs. Documents deposited in OPAL are the Open Access versions of outputs published elsewhere. Changes resulting from the publishing process may therefore not be reflected in this document. The final published version may be obtained via the publisher’s DOI. Please note that additional copyright and access restrictions may apply to the published version.Publisher DOI
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No categories selectedKeywords
Science & TechnologyLife Sciences & BiomedicineHealth Care Sciences & ServicesHealth Policy & ServicesPublic, Environmental & Occupational HealthcapacityCode of PracticecommunicationconsentethicsMental Capacity ActINTELLECTUAL DISABILITIESDECISION-MAKINGPARTICIPATIONDEMENTIACONSENTPEOPLEPublic Health