1. Subgroup differences in public attitudes, preferences and self-reported behaviour related to deceased organ donation before and after the introduction of the 'soft' opt-out consent system in England: mixed-methods study.
- Author
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Boadu P, McLaughlin L, Noyes J, O'Neill S, Al-Haboubi M, Williams L, Bostock J, and Mays N
- Subjects
- Humans, England, Male, Female, Cross-Sectional Studies, Adult, Middle Aged, Public Opinion, Self Report, Aged, Surveys and Questionnaires, Ethnicity statistics & numerical data, Ethnicity psychology, Young Adult, Tissue and Organ Procurement legislation & jurisprudence, Tissue and Organ Procurement statistics & numerical data, Informed Consent legislation & jurisprudence, Informed Consent statistics & numerical data
- Abstract
Background: In the UK, over 7,000 people are on the waiting list for an organ transplant and there are inequalities in need, access and waiting time for organs, with notable differences between minority ethnic groups. In May 2020, England changed the law and introduced a 'soft' opt-out system of consent to organ donation with a view to increase consent rates. We aimed to learn more about the impact of the law change on attitudes and views likely to be relevant to consent to deceased organ donation between different population subgroups., Methods: Mixed-methods design involving latent class analysis of data from twelve repeated cross-sectional surveys undertaken from 2015 to 2021 (n = 19,011); analysis of the law change survey dataset collected quarterly from 2018 to 2022 (n = 45,439); and interviews with purposively selected members of the public (n = 30) with a focus on minority perspectives., Results: Support for the principle of deceased organ donation remained high and stable in the general population (80%) but was 20% lower among ethnic minorities. From 2018 to 2022, an average of 58% of the general population was aware of the law change; this was lower among minority ethnic groups (31%). We identified four population subgroups (supportive donors (24% of the population); unengaged donors (22%); uncommitted donors (46%); and unsupportive donors (9%)). Interview themes included the challenges of discussing organ donation decisions, balancing autonomy with respecting family relationships, targeted misinformation, frustrations at the lack of consensus between community leaders, limited understanding of what happens during the end-of-life care leading to organ donation, and how this aligns with cultural values and preferences., Conclusion: Implementation of the law change has not been associated to date with any change in public attitudes and preferences likely to influence consent overall or in minority ethnic groups in England. Uncommitted donors may benefit from encouragement to express their organ donation decision, and unengaged donors from attempts to address mis/information, confusion, and uncertainty. Interventions to raise the consent rate need to take account of the significant role of the family as well as wider community influences on attitudes, preferences and decision-making, particularly among certain minority (ethnic) groups., Competing Interests: Ethics approval and consent to participate: This study was part of a broader national evaluation of the evolving organ donation system in England following the introduction of a soft-opt out policy in May 2020 [38]. For the qualitative component, informed written consent was sought before each interview. The quantitative data was anonymized and collected independently of the research team, informed individual consent was not required, but a data sharing agreement was put in place between NHSBT and LSHTM for use of the data. The respondents to the quantitative survey had a written consent with the survey organization. Ethical approval for the study was obtained from the LSHTM research ethics committee (Ref:26427) and HRA (Ref: 21/NW/0151). This research conforms to the provision of the Declaration of Helsinki and followed the STROBE guidelines for cross-sectional studies in conducting and reporting the research. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests. The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (© 2024. The Author(s).)
- Published
- 2024
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