Abstract
Introduction
In 2020 England moved to an opt-out deceased donation law. We aimed to investigate the views of a mixed stakeholder group comprising people with kidney disease, family members and healthcare practitioners towards the change in legislation. We investigated the expected impacts of the new legislation on deceased-donor and living-donor transplantation, and views on media campaigns regarding the law change.
Methods
We undertook in-depth qualitative interviews with people with kidney disease (n = 13), their family members (n = 4) and healthcare practitioners (n = 15). Purposive sampling was used to ensure diversity for patients and healthcare practitioners. Family members were recruited through snowball sampling and posters. Interviews were audio-recorded and transcribed verbatim. Transcripts were analysed using thematic analysis.
Results
Three themes with six subthemes were identified: (i) Expectations of impact (Hopeful patients; Cautious healthcare professionals), (ii) Living-donor transplantation (Divergent views; Unchanged clinical recommendations), (iii) Media campaigns (Single message; Highlighting recipient benefits). Patients expected the law change would result in more deceased-donor transplant opportunities.
Conclusions
Clinicians should ensure patients and families are aware of the current evidence regarding the impact of opt-out consent: expectations of an increased likelihood of receiving a deceased-donor transplant are not currently supported by the evidence. This may help to prevent a decline in living-donor transplantation seen in other countries with similar legislation. Media campaigns should include a focus on the impact of organ receipt.
In 2020 England moved to an opt-out deceased donation law. We aimed to investigate the views of a mixed stakeholder group comprising people with kidney disease, family members and healthcare practitioners towards the change in legislation. We investigated the expected impacts of the new legislation on deceased-donor and living-donor transplantation, and views on media campaigns regarding the law change.
Methods
We undertook in-depth qualitative interviews with people with kidney disease (n = 13), their family members (n = 4) and healthcare practitioners (n = 15). Purposive sampling was used to ensure diversity for patients and healthcare practitioners. Family members were recruited through snowball sampling and posters. Interviews were audio-recorded and transcribed verbatim. Transcripts were analysed using thematic analysis.
Results
Three themes with six subthemes were identified: (i) Expectations of impact (Hopeful patients; Cautious healthcare professionals), (ii) Living-donor transplantation (Divergent views; Unchanged clinical recommendations), (iii) Media campaigns (Single message; Highlighting recipient benefits). Patients expected the law change would result in more deceased-donor transplant opportunities.
Conclusions
Clinicians should ensure patients and families are aware of the current evidence regarding the impact of opt-out consent: expectations of an increased likelihood of receiving a deceased-donor transplant are not currently supported by the evidence. This may help to prevent a decline in living-donor transplantation seen in other countries with similar legislation. Media campaigns should include a focus on the impact of organ receipt.
| Original language | English |
|---|---|
| Number of pages | 10 |
| Journal | Health Expectations |
| Early online date | 24 Dec 2021 |
| DOIs | |
| Publication status | E-pub ahead of print - 24 Dec 2021 |
Bibliographical note
Funding Information:This study was funded in whole by the Wellcome Trust (Pippa K. Bailey is funded by a Wellcome Trust Clinical Research Career Development Fellowship [214554/Z/18/Z]). Lucy E. Selman is funded by a National Institute for Health Research (NIHR) Career Development Fellowship. Mohammed Al‐Talib is funded by an NIHR Academic Clinical Fellowship. Yoav Ben‐Shlomo is the cross‐cutting methodological theme lead for the NIHR Applied Research Collaboration West (ARC West). No funding body had any influence on the conception, design, analysis, or production of this manuscript, and the views it expresses are not necessarily those of any funding organisations. The views expressed in this publication are those of the authors and not necessarily those of the NHS, the Wellcome Trust, the National Institute for Health Research or the Department of Health. For the purpose of Open Access, the author has applied a CC‐BY public copyright licence to any Author Accepted Manuscript version arising from this submission. The authors would like to thank the two patient representatives from Bristol Health Partners' Kidney Disease Health Integration Team, Primrose Granville‐McIntosh and Soumeya Bouacida, for their contributions to the content and design of the study documents.
Publisher Copyright:
© 2021 The Authors. Health Expectations published by John Wiley & Sons Ltd.
Research Groups and Themes
- Palliative and End of Life Care
Keywords
- deceased donations
- opt-out law
- Organ donation
- qualitative interviews
- transplantation