Increasing rates of organ donation among ethnic minorities: community attitudes and challenges for health care systems
Public Health Sciences King's College London London, England
Department of General Practice King's College London London, England
Rates of deceased organ donation and transplantation vary substantially between European countries. There is also evidence that ethnic minorities across Europe have lower rates of donation and transplantation compared with the majority population but a similar or higher level of need.
This paper first examines organ donation in a European context. It then focuses on the specific situation of ethnic minorities and draws on our survey of ethnic minorities in south London to present data on knowledge and attitudes to organ donation among South Asian (from the Indian subcontinent), Black Caribbean and Black African ethnic groups. This indicates that although supporting the ?gift of life?, ethnic minorities have less knowledge about becoming a donor and more negative attitudes to donation. We then draw on qualitative studies of South Asian groups together with our indepth study of the beliefs and concerns of people of Caribbean origin, to examine the religious and cultural beliefs that shape attitudes to donation among ethnic and faith groups. For people of Caribbean origin we identified a key influence as feelings of marginalisation, with significance for trust in doctors and the medical system. This was combined with an idealised desire to retain their body ?whole? and return home to the Caribbean for burial to reconcile at death what has been a divided identity in life. Secondly, we critique the emphasis on community beliefs and attitudes and present an alternative perspective. This identifies a major influence on donation rates as arising from interactions with bereaved relatives and the consent discussion in hospital settings, with evidence that a key influence on consent rates is health professionals? competence in communicating at this time of considerable emotional distress. Such communication is however more challenging and may be avoided or more perfunctory when taking place across an ethnic divide. This points to the importance of a research and policy shift, with greater attention given to cross-cultural communication and support for bereaved relatives. These issues are considered in the context of current debates regarding the future organisation of organ donation in a European context.