Creating a sense of peace: a phenomenological study of the experience of a family member consenting to donate a deceased relative's organs (original) (raw)
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Experiencing organ donation: feelings of relatives after consent
Revista Latino-Americana de Enfermagem, 2015
Objective: to identify experiences and feelings on the organ donation process, from the perspective of a relative of an organ donor in a transplant unit.Method: this was exploratory research using a qualitative approach, performed with seven family members of different organ donors, selected by a lottery. Sociodemographic data and the experiences regarding the donation process were collected through semi-structured interviews. The language material was transcribed and submitted to content analysis.Results: poor sensitivity of the medical staff communicating the relative's brain death - the potential donor - and the lack of socio-emotional support prior to the situation experienced by the family was highlighted by participants.Conclusions: the study identified the need to provide social-emotional support for families facing the experience of the organ donation process. From these findings, other care and management practices in health must be discussed to impact the strengthening...
Organ donation experiences of family members
Nephrology nursing journal : journal of the American Nephrology Nurses' Association
The objective of this qualitative research study was to describe and interpret what life is like for individuals who have consented to donate the organs of a deceased relative for transplantation. This study captures the meaning of this phenomenon in a way to help nurses develop new insights into the lives of these individuals, enable them to implement strategies to better assist and support the family, and perhaps decrease barriers to organ donation. Thematic analysis of the participants' narrative descriptions identified five essential themes: the struggle to acknowledge the death, the need for a positive outcome of the death, creating a living memory, buying time, and the significance of support networks in the organ donation decision. The integration of these themes revealed the essence of the experience as creating of a sense of peace. These five themes and the essence of the experience are discussed in relation to the literature, followed by recommendations for future nurs...
The Spanish Journal of Psychology, 2008
Family perception of organ donation has been explored by numerous authors using statements by the people who decided whether or not to donate the organs of a relative in a situation of brain death. Within this tradition, in this work, we analyze the discourse of six families who granted permission for organ donation and three who refused. We describe the process-based interpretation of this experience and identify psychosocial variables and processes that further our understanding of the decision finally adopted. We have identified two heuristics that guide family decision when organ donation is requested: the explicit or inferred will of the deceased and family attitudes to organ donation and transplant. It is postulated that the interaction of these two factors explains a large amount of the decisions made. We also hypothesize that a marked discrepancy between these two factors increases the importance of other aspects, especially the role of the transplant coordinator and of othe...
Intensive and Critical Care Nursing, 2013
The aim of this study was to explore healthcare professionals' experiences and gain a deeper understanding of interactions with families when approaching the subject of organ donation. A hermeneutic phenomenological approach was used to explore the participants' experiences. Data were collected through a combination of observation and in-depth interviews with nurses, physicians and hospital chaplains recruited from two intensive care units (ICUs) in a Norwegian university hospital. A thematic analysis was used to analyse the data, and three main themes emerged from this analysis: crucial timing, challenging conversations and conflicting expectations. The results revealed that the situation was of a sensitive nature and that finding the best possible time to address the issue in a meaningful manner was a challenge. Respect for the patients' wishes and the families' decisions were an expressed value among the participants, but conflicting expectations about bringing up the subject were also present. This study contributes to the understanding of healthcare professionals' challenges when they are facing brain death as an inevitable outcome of a patient's clinical condition and must approach families on the subject of organ donation.
Experiences of donor families after consenting to organ donation: A qualitative study
Intensive & critical care nursing: the official journal of the British Association of Critical Care Nurses
The aim of this study was to investigate the experience of Norwegian donor families during organ donation after brain death. This was a qualitative study using personal interviews. Twenty donor-family members from thirteen different situations were interviewed about their experience of being a close relative in an organ donation situation. The principles of qualitative content analysis were used. An experience of strain caused by the organ donation situation was identified. Lack of comprehension and awareness of the process of organ donation contributed to this, and continuing information after the consent was given appeared to be necessary. Reconciliation with the decision of organ donation and the subsequent situation was gained through understanding the organ donation process, through recognition of the increased strain and through satisfaction resulting from the contribution made by organ donation. Healthcare personnel were key persons in contributing to such understanding and r...
Theoretical medicine and bioethics
Recent years have seen a rise in the number of sociological, anthropological, and ethnological works on the gift metaphor in organ donation contexts, as well as in the number of philosophical and theological analyses of giving and generosity, which has been mirrored in the ethical debate on organ donation. In order to capture the breadth of this field, four frameworks for thinking about bodily exchanges in medicine have been distinguished: property rights, heroic gift-giving, sacrifice, and gift-giving as aporia. Unfortunately, they all run into difficulties in terms of both making sense of the relational dimensions of postmortem and live organ donations and being normatively adequate in the sense of shedding light and providing guidance on ethical concerns when body parts are donated. For this reason, this article presents a phenomenological framework of giving-through-sharing, based on Maurice Merleau-Ponty’s philosophy. This framework makes sense of relational dimensions of postmortem and live organ donation. It also sheds light on three highly debated concerns in organ donation ethics: indebtedness on the part of recipients, the fact that some live donors do not experience donation as a matter of choice, and the potentially painful experience of donors’ relatives, who need to make decisions about postmortem organ donation at a time of bereavement. It can indirectly support what may be called a normalization of bodily exchanges in medicine.
Live Organ Donation: Social Context, Clinical Encounter, and the Psychology of Communication
Psychosomatics, 2005
Organ transplantation is increasingly available to the thousands of patients who suffer from endorgan failure. There has been an attendant increase in demand for living donor participation. This combined with a bioethical focus on autonomy increases the burden of decision on donor candidates. The authors review the history of living donor participation in organ transplantation and explore the psychological dynamics of the clinical encounter between donor and transplant surgeon. The field of communication psychology lends to the understanding of coercion and to the importance of donors possessing a status of patient-hood in the classical Hippocratic condition.
Canadian Medical Association Journal, 2022
Background: Decisions about organ donation are stressful for family members of potential organ donors. We sought to comprehensively explore the donation process from interviews conducted with family members of patients admitted to pediatric and adult intensive care units in Canada. We conducted a qualitative study using semistructured, in-depth interviews with 271 family members asked to make an organ donation decision. We recruited participants from all provinces with an organ donation organization (n = 10), and analyzed themes using a modified grounded theory approach. On the basis of these inter-views, suggestions were made by researchers and family members on how to improve the process of organ donation. We identified 3 main themes and 9 subthemes. Families need more comprehensive support around the time of donation, including having access to someone with shared experiences, support during specific moments as needed and better support during critical transitions (e.g., when the donor body goes to the operating room). The theme of better connection to recipient(s) included receiving information about the donation surgery (e.g., which organs were recovered), establishing connection with recipients (e.g., via social networks or letters) and planned encounters. Support after donation, such as updates on organ transplantation, early mental health checks and continued connection to donor organizations, could be improved. We derived 20 suggestions for improving the organ donation process, derived from interviews with family members of pediatric and adult organ donors. Interpretation: We found gaps in family support during end-of-life and donation care. Feelings of abandonment, lack of support and poor-to-little follow-up provide the empirical findings needed for hospitals and organ donor organizations to provide better support to donor families.
Dissonant loss: The experiences of donor relatives
Social Science & Medicine, 1996
Narrative type interviews were carried out with a purposive sample of 24 relatives of organ donors. Relatives were recruited through 3 Regional transplant co-ordinating centres in England. The study examined in-depth the relatives': emotional reactions to the death and donation, perceptions of the decision-making process, assessment of the problems donation caused for them, as well as the benefits it provided. An understanding of what the experience meant to them was elicited, as was the identification of their needs. The interviews were audiotaped and transcribed. The transcripts were analysed using a grounded theory approach, based on the constant comparative method. Themes emerging from the data were named to form categories. Categories were defined and integrated around the central theme of the research to form an analytical version of the story. Donor relatives' experiences were found to revolve around a process of conflict and resolution. Their experience is explained as a theory of "Dissonant Loss".
BMC Medical Ethics, 2016
Background: In the Netherlands, consent from relatives is obligatory for post mortal donation. This study explored the perspectives of relatives regarding the request for consent for donation in cases without donor registration. Methods: A content analysis of narratives of 24 bereaved relatives (14 in-depth interviews and one letter) of unregistered, eligible, brain-dead donors was performed. Results: Relatives of unregistered, brain-dead patients usually refuse consent for donation, even if they harbour pro-donation attitudes themselves, or knew that the deceased favoured organ donation. Half of those who refused consent for donation mentioned afterwards that it could have been an option. The decision not to consent to donation is attributed to contextual factors, such as feeling overwhelmed by the notification of death immediately followed by the request; not being accustomed to speaking about death; inadequate support from other relatives or healthcare professionals, and lengthy procedures. Conclusion: Healthcare professionals could provide better support to relatives prior to donation requests, address their informational needs and adapt their message to individual circumstances. It is anticipated that the number of consenting families could be enlarged by examining the experience of decoupling and offering the possibility of consent for donation after circulatory death if families refuse consent for donation after brain-death.