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A systematic review and narrative synthesis of the research provisions under the Mental Capacity Act (2005) in England and Wales : recruitment of adults with capacity and communication difficulties
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Jimoh, Oluseyi Florence, Ryan, Hayley, Killett, Anne, Shiggins, Ciara, Langdon, Peter E., Heywood, Rob and Bunning, Karen (2021) A systematic review and narrative synthesis of the research provisions under the Mental Capacity Act (2005) in England and Wales : recruitment of adults with capacity and communication difficulties. PLoS One, 16 (9). e0256697. doi:10.1371/journal.pone.0256697 ISSN 1932-6203.
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Official URL: https://doi.org/10.1371/journal.pone.0256697
Abstract
Background
The Mental Capacity Act (MCA, 2005) and its accompanying Code of Practice (2007), govern research participation for adults with capacity and communication difficulties in England and Wales. We conducted a systematic review and narrative synthesis to investigate the application of these provisions from 2007 to 2019.
Methods and findings
We included studies with mental capacity in their criteria, involving participants aged 16 years and above, with capacity-affecting conditions and conducted in England and Wales after the implementation of the MCA. Clinical trials of medicines were excluded. We searched seven databases: Academic Search Complete, ASSIA, MEDLINE, CINAHL, PsycArticles, PsycINFO and Science Direct. We used narrative synthesis to report our results. Our review follows Preferred Reporting Items for Systematic Reviews and is registered on PROSPERO, CRD42020195652.
28 studies of various research designs met our eligibility criteria: 14 (50.0%) were quantitative, 12 (42.9%) qualitative and 2 (7.1%) mixed methods. Included participants were adults with intellectual disabilities (n = 12), dementia (n = 9), mental health disorders (n = 2), autism (n = 3) and aphasia after stroke (n = 2). We found no studies involving adults with acquired brain injury. Diverse strategies were used in the recruitment of adults with capacity and communication difficulties with seven studies excluding individuals deemed to lack capacity.
Conclusions
We found relatively few studies including adults with capacity and communication difficulties with existing regulations interpreted variably. Limited use of consultees and exclusions on the basis of capacity and communication difficulties indicate that this group continue to be under-represented in research. If health and social interventions are to be effective for this population, they need to be included in primary research. The use of strategic adaptations and accommodations during the recruitment process, may serve to support their inclusion.
| Item Type: | Journal Article | ||||||
|---|---|---|---|---|---|---|---|
| Subjects: | H Social Sciences > HV Social pathology. Social and public welfare K Law [Moys] > KN Common Law, Private Law R Medicine > RC Internal medicine |
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| Divisions: | Faculty of Social Sciences > Centre for Educational Development, Appraisal and Research (CEDAR) | ||||||
| Library of Congress Subject Headings (LCSH): | Great Britain. Mental Capacity Act 2005, Capacity and disability , Mental health laws -- Great Britain, Mental health services -- Practice, People with mental disabilities, Intellectual disability , Mentally ill , Cognition disorders | ||||||
| Journal or Publication Title: | PLoS One | ||||||
| Publisher: | Public Library of Science | ||||||
| ISSN: | 1932-6203 | ||||||
| Official Date: | 1 September 2021 | ||||||
| Dates: |
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| Volume: | 16 | ||||||
| Number: | 9 | ||||||
| Article Number: | e0256697 | ||||||
| DOI: | 10.1371/journal.pone.0256697 | ||||||
| Status: | Peer Reviewed | ||||||
| Publication Status: | Published | ||||||
| Access rights to Published version: | Open Access (Creative Commons) | ||||||
| Date of first compliant deposit: | 7 September 2021 | ||||||
| Date of first compliant Open Access: | 14 September 2021 | ||||||
| RIOXX Funder/Project Grant: |
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