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

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:

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

Abbreviations

AOTA	=	Australian Organ and Tissue Authority
BPNA	=	The Bereaved Parent Needs Assessment
DCDD	=	Donation after circulatory determination of death
DNDD	=	Donation after neurological determination of death
DPMP	=	Donors per million population
DSNC	=	Donation Specialist Nursing Coordinator
HCPs	=	Healthcare professionals
HREC	=	Human Research Ethics Committee
ICU	=	Intensive care unit
IHPs	=	In-hospital processes
OD	=	organ donation
PIF	=	Participant Information Form
WCRS	=	Withdrawal of cardio-respiratory support

Authorship statement

All the authors made significant contributions to the study and the current manuscript. SGD developed the initial proposal for the PhD study, and this was accepted by the University of Canberra. The co-authors, his supervisors, assisted in the development of his research skills, the research plan, and the review of articles published as part of the extensive literature review. They played a supportive role during HREC review, data collection, analysis, and when reviewing and providing guidance related to the current report.

Acknowledgments

We would like to acknowledge the families who contributed to this study. Their input during data collection and analysis was made at a difficult time for them, and their endurance is appreciated We also acknowledge the input from stakeholders with lived experience during study design and HREC review. Their time contributed to the relevance of the study. When we were designing the study, Robert Fleet from the College of Arts and Social Sciences (CASS) and the Centre for Digital Humanities Research (CDHR) at the Australian National University (ANU) provided input for which we are grateful.

Disclosure statement

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

Supplemental data

Supplemental data for this article can be accessed online at https://doi.org/10.1080/17482631.2022.2149100

Additional information

Funding

S.G.D. acknowledges that, as a PhD candidate, financial support was received through an Australian Government Research Training Program Scholarship. There is no specific grant number for this funding.

Notes on contributors

Sean G. Dicks

Sean G. Dicks is a Clinical Psychologist and PhD candidate researching bereavement experiences of families of potential organ donors. Hearing family stories in his position as Family Support Coordinator at an organ donation agency, he became convinced that the time at the hospital offers unique opportunities for a specialized bereavement-care whether families consent to organ donation or not. His PhD explores this hypothesis.

Holly L. Northam

Holly L. Northam is a senior lecturer (teaching and research) in the School of Nursing, Midwifery and Public Health at the University of Canberra, Australia. Holly has a strong social justice focus. Her PhD study, ’Hope for a peaceful death and organ donation’ identified suffering as a barrier to organ donation caused by poor healthcare communication. Holly uses decolonizing restorative research approaches and the lens of hope to explore healthcare relationships. Two arms of her research reveal synergies. The first explores experiences of organ donation and transplantation, the second Indigenous equity gaps and cultural safety in healthcare. She is a director on boards of 2 healthcare consumer led NGOs.

Frank M.P. van Haren

Frank M.P. van Haren is a senior Intensive Care Physician and the Director of Intensive Care at the St George Hospital in Sydney. He is Full Professor at the Australian National University, Conjoint Professor at the University of New South Wales, Adjunct Professor at the University of Canberra and honorary Professorial Fellow at the George Institute for Global Health. He is an established international leader and expert in clinical and translational research in intensive care. He has published more than 150 articles and book chapters and given more than 130 invited presentations at international conferences. He also has significant experience in policy development for and providing advice to governments, both in developed and in developing countries.

Douglas P. Boer

Douglas P. Boer Ph.D. is Professor of Clinical Psychology at the University of Canberra. He is an active clinician and author in the fields of indigenous forensic issues, risk assessment of violence, and the assessment and treatment of offenders and persons with intellectual or developmental disabilities who have offended in a violent manner. He has over 110 publications, including test manuals, books, book chapters, and peer-reviewed articles. He is also on the editorial board of major journals in the fields of offender and disability issues.