Research with bereaved families

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. </jats:p

Life on the list: an exploratory study of the life world of individuals waiting for a kidney transplant

Kidney transplantation is the treatment of choice for many individuals with end stage renal disease (ESRD), as transplantation is reported to offer a greater quality of life than renal dialysis. At the end of March 2008 there were 6980 people on the active transplant list for kidney or kidney and pancreas transplants. However, during the previous year a total of 1453 deceased donor kidney transplants were carried out1, illustrating the mismatch between demand for and availability of kidneys for transplant. Whilst the Government has pledged to improve transplant services and to address the organ shortage, individuals on the kidney transplant list are currently facing an average wait of more than two years. Individuals waiting for a kidney transplant face complex challenges, which are currently poorly researched. An insight into the experience of waiting for a kidney transplant and how individuals interpret that wait could contribute to clinical knowledge and lead to improved support for these individuals. It could also raise public awareness about the issues involved in waiting for a kidney transplant, potentially encouraging donatio

When are bereaved family members approached for consent to organ donation: Commentary from 10 European member states

Background - To scope the timing of the approach to bereaved family members and request for organ donation in DBD and DCD potential donors, in 10 European member states. Are there changes in established practice regarding when family members are asked to consider organ donation? Methods – Representatives from 10 member states responded to a survey seeking information about: how death is diagnosed in the DBD and DCD potential donor; the legal consent system and law on organ donation; the existence of national or local protocols specifying when to approach relatives; and practices around the first moment of discussing organ donation and the formal request. Results – Findings suggest that the historic practice of decoupling the confirmation of death discussion and the request for organ donation in the potential DBD situation is becoming more ‘flexible’ or is changing to one in which a discussion about the potential of organ donation is taking place before confirmation of death. Conclusions – Decisions about the moment of asking may benefit from being embedded within local practices of ‘end of life’ care. Establishing donation as a usual part of end of life care would mean that the moment of asking would become a step in the dying trajectory, facilitating the fulfilment of wishes regarding post-death use of organs for transplantation

Doctors' and nurses' views and experience of transferring patients from critical care home to die: a qualitative exploratory study.

BACKGROUND: Dying patients would prefer to die at home, and therefore a goal of end-of-life care is to offer choice regarding where patients die. However, whether it is feasible to offer this option to patients within critical care units and whether teams are willing to consider this option has gained limited exploration internationally. AIM: To examine current experiences of, practices in and views towards transferring patients in critical care settings home to die. DESIGN: Exploratory two-stage qualitative study SETTING/PARTICIPANTS: Six focus groups were held with doctors and nurses from four intensive care units across two large hospital sites in England, general practitioners and community nurses from one community service in the south of England and members of a Patient and Public Forum. A further 15 nurses and 6 consultants from critical care units across the United Kingdom participated in follow-on telephone interviews. FINDINGS: The practice of transferring critically ill patients home to die is a rare event in the United Kingdom, despite the positive view of health care professionals. Challenges to service provision include patient care needs, uncertain time to death and the view that transfer to community services is a complex, highly time-dependent undertaking. CONCLUSION: There are evidenced individual and policy drivers promoting high-quality care for all adults approaching the end of life encompassing preferred place of death. While there is evidence of this choice being honoured and delivered for some of the critical care population, it remains debatable whether this will become a conventional practice in end of life in this setting

Bereaved donor families' experiences of organ and tissue donation, and perceived influences on their decision making

This is an accepted manuscript of an article published by Elsevier in Journal of Critical Care on 16/01/2018, available online: https://www.sciencedirect.com/science/article/abs/pii/S0883944117311929?via%3Dihub The accepted version of the publication may differ from the final published version.Purpose To elicit bereaved families' experiences of organ and tissue donation. A specific objective was to determine families' perceptions of how their experiences influenced donation decision-making. Methods Retrospective, qualitative interviews were undertaken with 43 participants of 31 donor families to generate rich, informative data. Participant recruitment was via 10 National Health Service Trusts, representative of five regional organ donation services in the UK. Twelve families agreed to DBD, 18 agreed to DCD, 1 unknown. Participants' responses were contextualised using a temporal framework of ‘The Past’, which represented families' prior knowledge, experience, attitudes, beliefs, and intentions toward organ donation; ‘The Present’, which incorporated the moment in time when families experienced the potential for donation; and ‘The Future’, which corresponded to expectations and outcomes arising from the donation decision. Results Temporally interwoven experiences appeared to influence families' decisions to donate the organs of their deceased relative for transplantation. Conclusions The influence of temporality on donation-decision making is worthy of consideration in the planning of future education, policy, practice, and research for improved rates of family consent to donation