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.