Article Text
Abstract
Objective To examine health and social care professionals’ understanding of the legislation governing research involving adults lacking mental capacity in England and Wales.
Methods A cross-sectional online survey was conducted using a series of vignettes. Participants were asked to select the legally authorised decision-maker in each scenario and provide supporting reasons. Responses were compared with existing legal frameworks and analysed according to their level of concordance.
Results One hundred and twenty-seven professionals participated. Levels of discordance between responses and the legal frameworks were high across all five scenarios (76%–82%). Nearly half of the participants (46%) provided responses that were discordant in all scenarios. Only two participants (2%) provided concordant responses across all five scenarios.
Discussion Participants demonstrated a lack of knowledge about the legal frameworks, the locus of authority and the legal basis for decision-making. The findings raise concern about the accessibility of research for those who lack capacity, the ability to conduct research involving such groups and the impact on the evidence base for their care.
Conclusion This is the first study to examine health and social care professionals’ knowledge and understanding of the dual legal frameworks in the UK. Health and social care professionals’ understanding and attitudes towards research involving adults with incapacity may warrant further in-depth exploration. The findings from this survey suggest that greater training and education is required.
- capacity
- third party consent/incompetents
- demographic surveys/attitudes
- legal aspects
- clinical trials
This is an open access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/
Statistics from Altmetric.com
Footnotes
Contributors This study forms part of an NIHR Doctoral Research Fellowship held by VS, and supervised by FW, KH, MS and RG. All authors conceived the study. VS created the vignettes, recruited participants, conducted the initial data analysis and drafted the manuscript VS, FW, RG and KH developed the survey questionnaire. All authors contributed to developing the key themes. All authors critically revised the manuscript and subsequent revisions. The submitted version was approved by all authors.
Funding VS was supported by a National Institute of Health Research Doctoral Research Fellowship, funded by the Welsh Government through Health and Care Research Wales. MS is grateful for the support of the Oxford NIHR Biomedical Research Centre.
Competing interests None declared.
Ethics approval The study was approved by Cardiff University School of Medicine Ethics Committee (Ref 16/63).
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement Supporting data are available on request: please contact opendata@cardiff.ac.uk.
Other content recommended for you
- Psychosocial impact on frontline health and social care professionals in the UK during the COVID-19 pandemic: a qualitative interview study
- CoMPASs: IOn programme (Care Of Memory Problems in Advanced Stages of dementia: Improving Our Knowledge): protocol for a mixed methods study
- Collaborative design of a decision aid for stroke survivors with multimorbidity: a qualitative study in the UK engaging key stakeholders
- Identifying integrated health services and social care research priorities in kidney disease in Wales: research prioritisation exercise
- Exploring how people with dementia can be best supported to manage long-term conditions: a qualitative study of stakeholder perspectives
- Information sharing challenges in end-of-life care: a qualitative study of patient, family and professional perspectives on the potential of an Electronic Palliative Care Co-ordination System
- Developing a palliative care competence framework for health and social care professionals: the experience in the Republic of Ireland
- A protocol for an exploratory phase I mixed-methods study of enhanced integrated care for care home residents with advanced dementia: the Compassion Intervention
- Building capacity: getting evidence-based practice into healthcare professional curricula
- Characterising the health and social care segment of the BCS (The Chartered Institute for IT) membership and their continuing professional development needs