Evidence map›Paper›PMID 37116998›Full record

ArticleBMJ open2023

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.

Anne Killett, Peter E Langdon, Hayley Ryan, Ciara Shiggins, Rob Heywood, Oluseyi F Jimoh, Marcus Redley, Karen Bunning

Abstract read
In one paragraph

Article in BMJ open, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Anne KillettSchool of Health Sciences, University of East Anglia, Norwich, UK.ORCID 0000-0003-4080-8365
Peter E LangdonCentre for Educational Development, Appraisal and Research, University of Warwick, Coventry, UK Peter.Langdon@warwick.ac.uk.ORCID 0000-0002-7745-1825
Hayley RyanFaculty of Medicine and Health, University of East Anglia, Norwich, UK.
Ciara ShigginsQueensland Aphasia Research Centre, The University of Queensland, Saint Lucia, Queensland, Australia.
Rob HeywoodLaw, University of East Anglia, Norwich, UK.
Oluseyi F JimohSchool of Health Sciences, University of East Anglia, Norwich, UK.
Marcus RedleySchool of Health Sciences, University of East Anglia, Norwich, UK.
Karen BunningSchool of Health Sciences, University of East Anglia, Norwich, UK.ORCID 0000-0002-7396-9205

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectivesWe 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.

designThe 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.

settingEngland and Wales.

participantsThere 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.

resultsAll 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.

conclusionFurther 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.

Indexed as

FamilyResearch DesignAdultCommunicationEnglandEthics Committees, ResearchHumansDelirium & cognitive disordersHealth policyMEDICAL ETHICSMENTAL HEALTHQUALITATIVE RESEARCH

Identifiers

PMID37116998
PMCPMC10151840

What Socratic holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.