Family bereavement and the potential for organ donation
: An exploration of factors influencing initial experiences and ongoing adjustment

  • Sean Dicks

    Student thesis: Doctoral Thesis

    Abstract

    Studies exploring family experiences of sudden death in the organ donation context show that compassionate care and information enable informed decisions. The current study takes a broader view, considering the influences of acute stress following a relative’s critical injury, facing death in an unfamiliar environment, experiencing symptoms of acute grief, the disruption of individual and family worldviews and narratives, and the need to respond to changed roles and family dynamics, given that the patient cannot participate. On the one hand, the additional lenses show that families experience multiple stressors simultaneously. On the other hand, novel leverage points and opportunities for family care are highlighted. Links between pre-existing family characteristics, in-hospital experiences, and ongoing adjustment illuminate the role that time at the hospital can play in family well-being whether the family consents to donation or not. In preparation for the prospective longitudinal case study, four critical reviews facilitated holistic understanding of the context and highlighted implications for bereaved family members. The first of these focussed on experiences at the hospital and proposed a novel psychosocial model of interaction within and between the family and staff systems (I), while the second related family experiences to current theories of grief (II). A third review synthesized literature from the donation and transplantation fields to explore relationships between consenting families and transplant recipients (III), while a final review looked at the roles and needs of healthcare professionals at the hospital (IV). A fifth article explored the evolution of research and meaning-making in the organ donation field to identify research priorities (V). Stakeholders, including families who had previously made decisions about organ donation, provided input when the research plan was created, and also during ethics review. A sixth publication explored the interaction between these stakeholders, the candidate, and the ethics committee (VI). Participants from five families, that had each consented to Donation after Circulatory Determination of Death (DCDD), were interviewed at three points during the year after the in-hospital death of their relative. Cross-case analysis confirmed that in-hospital experiences offer opportunities for specialised bereavement care, and it was proposed that training for healthcare professionals should include conceptual and practical components related to trauma, grief, meaning-making and systems theory (VII). A single-case analysis was conducted after five members of one of the families contributed for the full year (VIII). To provide empathic understanding of the family’s experiences, extracts from interviews were used to create a creative nonfiction dialogue, enabling the family to tell their own story (IX). The study shows that while working together in a supportive psychosocial environment at the hospital, family members appreciate closeness with the patient, and start to make sense of their changed lives, create memories of family togetherness, and strengthen family relationships. In the months thereafter, memories of care and guidance offered by healthcare professionals and, when transplants occurred, thoughts about recipient progress, become part of the deceased’s biography, the story of their death, and the family narrative. The study also found that novel intra-family interaction that was useful at the hospital was later drawn into family life, thereby contributing to family adjustment.
    Date of Award2022
    Original languageEnglish
    SupervisorDouglas Boer (Supervisor), Frank Vanharen (Supervisor) & Holly Louise Northam (Supervisor)

    Cite this

    '