Theoretical debates about the nature of grief and bereavement draw attention to the sensitivity of carrying out research with bereaved people, the possible threats that this may pose and the ethical considerations required to ameliorate potentially damaging outcomes. The authors of this article present a framework for ethical decision-making that has been successfully developed in the context of research with bereaved families. The discussion focuses on application and evaluation of the framework during research with family members who were approached about (...) the donation of a deceased relative’s organs and/or tissues for transplantation. Practical strategies of relevance to the processes of participant recruitment, the interview encounter and follow-up care in the post-interview period are identified and discussed. Concerns about the possible impact of bereavement research are balanced with the views of family members who gave credence to the therapeutic and cathartic benefits of participating in sensitive, death-related research. (shrink)

Globally there is a shortage of organs available for transplant resulting in thousands of lives lost as a result. Recently in the United Kingdom 457 people died as a result of organ shortage in just 1 year. 1 NHS Blood and Transplant suggest national debates to test public attitudes to radical actions to increase organ donation should be considered in addressing organ shortage. The selling of organs for transplant in the United Kingdom is prohibited under the Human Tissue Act 2004. (...) This discussion paper considers five ethical objections raised in the United Kingdom to paid donation and discusses how these objections are addressed within the only legal and regulated paid living unrelated renal donation programme in the world in Iran, where its kidney transplant list was eliminated within 2 years of its commencement. This article discusses whether paid living unrelated donation in Iran increases riskier donations and reduced altruistic donation as opponents of paid donation claim. The paper debates whether objections to paid donation based upon commodification arguments only oppose enabling financial ends, even if these ends enable beneficent acts. Discussions in relation to whether valid consent can be given by the donor will take place and will also debate the objection that donors will be coerced and exploited by a paid model. This article suggests that exploitation of the paid donor within the Iranian model exists within the legally permitted framework. However, paid living kidney donation should be discussed further and other models of paid donation considered in the United Kingdom as a radical means of increasing donation. (shrink)

Background: Black, Asian and minority ethnic 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. Objective: To 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. Methods: Three-phase programme comprising 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; hospital-based research examining staff practices and influences on family consent through ethics discussion groups with staff, a study on intensive care units and interviews with bereaved ethnic minority families; and development and evaluation of a training package to enhance cultural competence among ICU staff. Setting: Community focus group study in eight London boroughs with high prevalence of ethnic minority populations. Hospital studies at five NHS hospital trusts. Participants: Community studies: 228 focus group participants; hospital studies: 35 nurses, 28 clinicians, 19 hospital chaplains, 25 members of local Organ Donation Committees, 17 bereaved family members; and evaluation: 66 health professionals. Data sources: Focus 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 methods: Systematic review and narrative synthesis. Results: 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. 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 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 death. Hospital chaplains differed in their involvement in ICUs, reflecting their availability/employment status, personal interests and the practices of ICU staff. Evaluation: professional development package – a digital versatile disk-based training package was developed to promote confidence and skills in cross-cultural communication. 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. Limitations: Participants 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. Conclusions: The 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 work: Greater 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. Funding: The National Institute for Health Research Programme Grants for Applied Research programme. (shrink)