{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,20]],"date-time":"2026-10-20T19:30:20Z","timestamp":1792524620858,"version":"4.5.0"},"reference-count":21,"publisher":"BMJ","issue":"4","license":[{"start":{"date-parts":[[2023,4,28]],"date-time":"2023-04-28T00:00:00Z","timestamp":1682640000000},"content-version":"unspecified","delay-in-days":27,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000279","name":"Nuffield Foundation","doi-asserted-by":"publisher","award":["NA"],"award-info":[{"award-number":["NA"]}],"id":[{"id":"10.13039\/501100000279","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"published-print":{"date-parts":[[2023,4]]},"abstract":"<jats:sec><jats:title>Objectives<\/jats:title><jats:p>We aimed to: (A) describe researcher decision-making when including or excluding adults with conditions that have the potential to affect capacity and\/or communication in research and (B) explore the underlying values and reasoning of stakeholders in research which falls under the provisions of the Mental Capacity Act, 2005.<\/jats:p><\/jats:sec><jats:sec><jats:title>Design<\/jats:title><jats:p>The mixed-methods design included semistructured interviews with adults with conditions that have the potential to affect capacity and\/or communication, supporters, researchers, research ethics committee members and an online survey with researchers. Triangulation was used to integrate the data and examine the complementarity of the findings.<\/jats:p><\/jats:sec><jats:sec><jats:title>Setting<\/jats:title><jats:p>England and Wales.<\/jats:p><\/jats:sec><jats:sec><jats:title>Participants<\/jats:title><jats:p>There were 61 participants who took part in semistructured interviews, of which 39 were adults with conditions with potential to affect capacity and\/or communication, 6 were in support roles for adults with conditions with potential to affect capacity and\/or communication (including family members and professionals in advocacy organisations), 8 were members of research ethics committees flagged under the Mental Capacity Act to review research where there could be issues of mental capacity and 8 were researchers with experience of working with adults with conditions that have the potential to affect capacity and\/or communication. The online survey had 128 participants, researchers with experience of working with adults with conditions that have the potential to affect capacity and\/or communication.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>All stakeholders were supportive of the genuine inclusion of adults with conditions that have the potential to affect capacity and\/or communication in research, and exclusion was seen as a form of discrimination. Many researchers were daunted by meeting the threshold within the legislation for including participants who may lack capacity.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Further training, expertise and resources are required to promote the successful inclusion in research of adults with conditions that have the potential to affect capacity and\/or communication.<\/jats:p><\/jats:sec>","DOI":"10.1136\/bmjopen-2022-068366","type":"journal-article","created":{"date-parts":[[2023,4,28]],"date-time":"2023-04-28T17:30:43Z","timestamp":1682703043000},"page":"e068366","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":6,"title":["Inclusion of adults with conditions that have the potential to affect capacity and or communication in research: triangulation from a mixed-methods study of current practice and values across multiple stakeholders"],"prefix":"10.1136","volume":"13","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4080-8365","authenticated-orcid":false,"given":"Anne","family":"Killett","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7745-1825","authenticated-orcid":false,"given":"Peter E","family":"Langdon","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hayley","family":"Ryan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ciara","family":"Shiggins","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rob","family":"Heywood","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Oluseyi F","family":"Jimoh","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marcus","family":"Redley","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7396-9205","authenticated-orcid":false,"given":"Karen","family":"Bunning","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2023,4,28]]},"reference":[{"key":"2023042810300870000_13.4.e068366.1","doi-asserted-by":"publisher","DOI":"10.1111\/jir.12091"},{"key":"2023042810300870000_13.4.e068366.2","doi-asserted-by":"crossref","unstructured":"He J , Morales DR , Guthrie B . 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