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.

ObjectivesTo identify effective interventions to increase organ donor registration and improve knowledge about organ donation among ethnic minorities in North America and the UK.DesignSystematic review.Data SourcesMEDLINE, EMBASE, PsycINFO, CINAHL and Cochrane Central searched up to November 2012, together with four trials databases and the grey literature.Review methodsA systematic search followed by assessment of eligibility and quality. An interpretive and thematic approach to synthesis was undertaken. This examined the nature and delivery of interventions in relation to a range of outcomes: verified registration, changing knowledge and a measured shift towards greater readiness.Results18 studies were included in the review, comprising educational and mass media interventions. Mass media interventions alone reported no significant change in the intention or willingness to register. Educational interventions either alone or combined with mass media approaches were more effective in increasing registration rates, with a strong interpersonal component and an immediate opportunity to register identified as important characteristics in successful change.ConclusionsEffective interventions need to be matched to the populations’ stage of readiness to register. Measured outcomes should include registration and shifts along the pathway towards this behavioural outcome.

BackgroundBlack, Asian and minority ethnic (BAME) groups have a high need for organ transplantation but deceased donation is low. This restricts the availability of well-matched organs and results in relatively long waiting times for transplantation, with increased mortality risks.ObjectiveTo identify barriers to organ donor registration and family consent among the BAME population, and to develop and evaluate a training intervention to enhance communication with ethnic minority families and identify impacts on family consent.MethodsThree-phase programme comprising (1) community-based research involving two systematic reviews examining attitudes and barriers to organ donation and effective interventions followed by 22 focus groups with minority ethnic groups; (2) hospital-based research examining staff practices and influences on family consent through ethics discussion groups (EDGs) with staff, a study on intensive care units (ICUs) and interviews with bereaved ethnic minority families; and (3) development and evaluation of a training package to enhance cultural competence among ICU staff.SettingCommunity focus group study in eight London boroughs with high prevalence of ethnic minority populations. Hospital studies at five NHS hospital trusts (three in London and two in Midlands).Participants(1) Community studies: 228 focus group participants; (2) hospital studies: 35 nurses, 28 clinicians, 19 hospital chaplains, 25 members of local Organ Donation Committees, 17 bereaved family members; and (3) evaluation: 66 health professionals.Data sourcesFocus groups with community residents, systematic reviews, qualitative interviews and observation in ICUs, EDGs with ICU staff, bereaved family interviews and questionnaires for trial evaluation.Review methodsSystematic review and narrative synthesis.Results(1) Community studies: Organ Donor Register – different ethnic/faith and age groups were at varying points on the ‘pathway’ to organ donor registration, with large numbers lacking knowledge and remaining at a pre-contemplation stage. Key attitudinal barriers were uncertainties regarding religious permissibility, bodily concerns, lack of trust in health professionals and little priority given to registration, with the varying significance of these factors varying by ethnicity/faith and age. National campaigns focusing on ethnic minorities have had limited impact, whereas characteristics of effective educational interventions are being conducted in a familiar environment; addressing the groups’ particular concerns; delivery by trained members of the lay community; and providing immediate access to registration. Interventions are also required to target those at specific stages of the donation pathway. (2) Hospital studies: family consent to donation – many ICU staff, especially junior nurses, described a lack of confidence in communication and supporting ethnic minority families, often reflecting differences in emotional expression, faith and cultural beliefs, and language difficulties. The continuing high proportion of family donation discussions that take place without the collaboration of a specialist nurse for organ donation (SNOD) reflected consultants’ views of their own role in family consent to donation, a lack of trust in SNODs and uncertainties surrounding controlled donations after circulatory (or cardiac) death. Hospital chaplains differed in their involvement in ICUs, reflecting their availability/employment status, personal interests and the practices of ICU staff. (3) Evaluation: professional development package – a digital versatile disc-based training package was developed to promote confidence and skills in cross-cultural communication (available at:www.youtube.com/watch?v=ueaR6XYkeVM&feature=youtu.be). Initial evaluation produced positive feedback and significant affirmative attitudinal change but no significant difference in consent rate over the short follow-up period with requirements for longer-term evaluation.LimitationsParticipants in the focus group study were mainly first-generation migrants of manual socioeconomic groups. It was not permitted to identify non-consenting families for interview with data regarding the consent process were therefore limited to consenting families.ConclusionsThe research presents guidance for the effective targeting of donation campaigns focusing on minority ethnic groups and provides the first training package in cultural competence in the NHS.Future workGreater evaluation is required of community interventions in the UK to enhance knowledge of effective practice and analysis of the experiences of non-consenting ethnic minority families.FundingThe National Institute for Health Research Programme Grants for Applied Research programme.

Thaler and Sunstein's behavioural-economics theory of 'Nudge' aims to achieve beneficial outcomes for individuals and the society through designing the contexts in which choices are made rather than relying on traditional policy levers of restrictions, penalties and education. This article examines Nudge strategies to increase registration as a deceased organ donor among minority ethnic groups based on 22 focus groups that were held with Black and South Asian minority ethnic groups in London, UK. The article identifies ways in which minority ethnic groups' habitus appears to limit awareness and knowledge of the system of organ donation and shapes attitudes to registration, with the varying influence of faith/culture and trust in the system reflecting differences in prior contexts and experience. This questions a key requirement of Nudge in terms of its libertarian dimension and suggests that focusing on the immediate choice context and neglecting individuals' prior dispositions may not achieve desired outcomes for socially heterogeneous populations.

There is scope for greater training and involvement of hospital chaplains in hospital work on organ donation, and in developing new forms of community engagement to promote awareness and debate.