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. 2023 Dec;18(1):2149100.
doi: 10.1080/17482631.2022.2149100.

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

Sean G Dicks  1 , Holly L Northam  2 , Frank M P van Haren  3 , Douglas P Boer  1
Affiliations

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

Sean G Dicks et al. Int J Qual Stud Health Well-being. 2023 Dec.

Abstract

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.

Keywords: DCDD; ICU; bereavement; end-of-life-care; family bereavement; family resilience; organ donation; posttraumatic growth; “Patient and public involvement”.

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Conflict of interest statement

No potential conflict of interest was reported by the author(s).

Figures

Figure 1.
Figure 1.
Relationships between posttraumatic growth and complicated grief. Adapted with permission from “Bereavement outcomes as causal systems: A network analysis of the co-occurrence of complicated grief and posttraumatic growth.” by B.W. Bellet et al. (2018), Clinical Psychological Science, 6(6), 805. (https://doi.org/10.1177/2167702618777454).
See this image and copyright information in PMC

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