Attitudes to deceased organ donation and registration as a donor among minority ethnic groups in North America and the UK: a synthesis of quantitative and qualitative research

Objectives. A systematic review and synthesis of quantitative and qualitative research were undertaken to examine attitudes to deceased donation and registration as an organ donor among ethnic minorities in the UK and North America. Design. A systematic search and assessments of relevance and quality were conducted. Parallel syntheses were then undertaken of 14 quantitative and 12 qualitative papers followed by their integration. The synthesis was organised around five barriers that emerged as key issues: (1) knowledge regarding deceased donation and registration as a donor; (2) discussion of donation/registration with family members; (3) faith and cultural beliefs; (4) bodily concerns including disfigurement and intactness; and (5) trust in doctors and the health care system. Results. In all countries, knowledge of organ donation and registration remained low despite public campaigns, with African-Americans and Black African and Black Caribbean populations in the UK often regarding organ donation as a ‘white’ issue. Each of the four attitudinal barriers was also more prevalent among ethnic minorities compared with the majority population. However, the significance of trust and uncertainties regarding religion/faith differed between groups, reflecting salient aspects of ethnic identity and experiences. Differences were also identified within ethnic groups associated with age and generation, although respect for the views of elders often influenced younger peoples' willingness to donate. Conclusion. There is a need for a more nuanced understanding of ethnicity and of variations in attitudes associated with country of origin, age/generation, socio-economic status and area of residence, to inform public campaigns and promote sensitive discussions with bereaved ethnic minority families. The traditional focus on knowledge and attitudes also requires to be complemented by a greater emphasis on organisational and service-related barriers and changes required to enhance ethnic minorities' access to registration as a donor and consent to deceased donation.