Overcoming barriers to registering as an organ donor among minority ethnic groups

Author(s): Jessica Mai Sims;   Charlotte Kenten;   Sarah Deedat;   Gurch Randhawa;   Myfanwy Morgan ;  

Briefing series: Better Health Briefing Paper 25

Publisher: Race Equality Foundation

Publication date: November 2012

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     Overcoming barriers to registering as an organ donor among minority ethnic groups
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This paper explores the reasons for the lower rates of organ donor registration among black and minority ethnic groups by reviewing relevant UK literature and drawing on findings from a community study of the Donation, Ethnicity and Transplantation (DonaTE) Programme. The community study comprised of 22 focus groups drawn from Nigerian, Caribbean, Indian, Pakistani and Bangladeshi communities in London (stratified by ethnicity, faith, age category and in the case of South Asian groups, by gender) to investigate differences in attitudes and beliefs both within and between ethnic groups.  The paper first outlines evidence regarding the barriers to registering and then identifies ways in which targeted campaigns can improve understanding and awareness of deceased organ donation among black and minority ethnic groups, and increase organ donor registrations.

Key messages

  • Despite the many ways to join the Organ Donor Register (ODR), the effectiveness of particular methods in reaching black and minority ethnic groups is unknown.
  • The final decision of whether to donate or not is made by family members, with a need for greater discussion of choices about donation with family members.
  • Myths and anxieties about the organ donation process may prevent particular black and minority ethnic individuals or groups from joining the ODR.
  • Although black and minority ethnic groups are generally positive about organ donation and transplantation, the ambiguity around their faith’s interpretation limits registration.
  • Strategies to promote registration should be guided by monitoring and evaluation and emphasise engaging people on individual, local and national levels.

Sections

  • What do black and minority ethnic groups know about registration?
  • Role of the family in donation decisions
  • Anxieties and myths about registration and donation
  • Faith-based concerns to organ donation
  • Recommendations for policy and practice