The bereavement experiences of families of potential organ donors: a qualitative longitudinal case study illuminating opportunities for family care.

OBJECTIVES: To illuminate opportunities for care in the context of deceased organ donation by exploring pre-existing family and healthcare professional characteristics, in-hospital experiences, and ongoing adjustment through the lenses of grief theory, systems theory, meaning-making, narrative, and organ donation literature. METHOD: Qualitative longitudinal case studies explored individual and family change in five Australian families who had consented to Donation after Circulatory Determination of Death at a single centre. Participants attended semi-structured interviews at four, eight, and twelve months after the death. FINDINGS: Family values, pre-existing relationships, and in-hospital experiences influenced first responses to their changed lives, understanding of the patient's death, and ongoing family adjustment. Novel behaviour that was conguent with family values was required at the hospital, especially if the patient had previously played a key role in family decision-making. This behaviour and emerging interactional patterns were drawn into family life over the first year of their bereavement. RECOMMENDATIONS: Training that includes lenses introduced in this study will enable healthcare professionals to confidently respond to individual and family psychosocial needs. CONCLUSION: The lenses of grief theory and systems thinking highlight opportunities for care tailored to the unique in-hospital context and needs that emerge in the months that follow.

Grief, Stress, Trauma, and Support During the Organ Donation Process.

The organ donation process is complex and stressful for the family of the potential donor and members of the multidisciplinary team who may experience grief, ethical dilemmas, vicarious trauma, or compassion fatigue. Several studies each explore the role of a specific healthcare group and the impact of inhospital processes on group members. We conducted a systematic literature search to identify such studies and a qualitative synthesis to consolidate findings and highlight features of the interaction and relationships between role players. Our results suggest that, while healthcare professionals have different roles, attitudes, and views, the experience of stressors and interdisciplinary tension is common. Nevertheless, staff are united by the goal of caring for the patient and family. We therefore propose that, while focusing on bereavement care and other aspects of the family's experience, staff can find other shared goals and develop understanding, trust, empathy, and respect for each other's positions, thereby improving functioning in the complex adaptive system that forms at this time. Education and training can equip staff to facilitate anticipatory mourning, family-led activities, and a meaningful parting from their relative, assisting families with their grief and increasing staff members' efficacy, confidence, and interdisciplinary teamwork. Knowledge of systems thinking and opportunities to share ideas and experiences will enable staff to appreciate each other's roles, while supportive mentors, self-care strategies, and meaningful feedback between role players will foster healthy adjustment and shared learning. A focus on psychosocial outcomes such as family satisfaction with the process, collaboration within the multidisciplinary team, and reduction in the role stress of healthcare professionals will contribute to family well-being as well as personal and professional growth for staff.

A novel approach to studying co-evolution of understanding and research: Family bereavement and the potential for organ donation as a case study.

A novel approach to data extraction and synthesis was used to explore the connections between research priorities, understanding and practice improvement associated with family bereavement in the context of the potential for organ donation. Conducting the review as a qualitative longitudinal study highlighted changes over time, and extraction of citation-related data facilitated an analysis of the interaction in this field. It was found that lack of 'communication' between researchers contributes to information being 'lost' and then later 'rediscovered'. It is recommended that researchers should plan early for dissemination and practice improvement to ensure that research contributes to change.