Barriers to conversations about deceased organ donation among adults living in the UK: a systematic review with narrative synthesis

Abstract

Objectives To explore the barriers to conversations about deceased organ donation among adults living in the UK. Design Systematic review with narrative synthesis. Data sources PubMed, MEDline via OVID, APA PsycInfo via EBSCO, Web of Science via Clarivate and Scopus via Elsevier, covering studies that were published between January 2006 and December 2023. Searches were conducted on 1 December 2023 and completed on 2 February 2024. Eligibility criteria Studies published between January 2006 and December 2023, focusing on barriers to organ donation conversations among adults in the UK. Both qualitative and quantitative studies were included, emphasising cultural and generational factors. Non-English studies and those unrelated to the UK were excluded. Data extraction and synthesis Screening and data extraction were conducted by two independent reviewers using a standardised tool. Quality assessment was performed using Joanna Briggs Institute checklists, evaluating study bias. A narrative synthesis approach was used to integrate findings from heterogeneous studies. Results 11 studies (6 qualitative, 5 quantitative) with a total of 4991 participants were included. Four main thematic barriers emerged: (1) jinx factor—cultural beliefs associating discussion of death with bad luck; (2) generational impact—younger people were more open but cautious of upsetting parents; (3) ethnic disparities in conversations—varied challenges across diverse backgrounds and (4) cues to action—media and personal experiences prompted conversations. Facilitators included culturally tailored communication and community engagement. Conclusion Conversations about death and organ donation are often brief and hindered by cultural taboos surrounding death, generational differences in attitudes and the influence of family dynamics. Further research is needed to understand communication patterns better and to tailor interventions that encourage open discussions about organ donation across different ethnic groups.