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. 2024 Dec 27;28(1):434.
doi: 10.1186/s13054-024-05198-2.

Family concerns in organ donor conversations: a qualitative embedded multiple-case study

Sanne P C van Oosterhout  1 , Anneke G van der Niet  1 , Wilson F Abdo  2 , Marianne Boenink  1 , Jelle L P van Gurp  1 , Gert Olthuis  3
Affiliations

Family concerns in organ donor conversations: a qualitative embedded multiple-case study

Sanne P C van Oosterhout et al. Crit Care. .

Abstract

Background: Listening and responding to family concerns in organ and tissue donation is generally considered important, but has never been researched in real time. We aimed to explore in real time, (a) which family concerns emerge in the donation process, (b) how these concerns manifest during and after the donor conversation, and (c) how clinicians respond to the concerns during the donor conversation.

Methods: A qualitative embedded multiple-case study in eight Dutch hospitals was conducted. Thematic analysis was performed based on audio recordings and direct observations of 29 donor conversations and interviews with the family members involved (n = 24).

Results: Concerns clustered around six topics: 1) Life-event of a relative's death, 2) Dying well, 3) Tensions and fears about donation, 4) Experiences of time, 5) Procedural clarity, and 6) Involving (non-)present family. Most concerns occurred in topics 1 and 2. Clinicians mostly responded to concerns by providing information or immediate solutions, while sometimes acknowledgement sufficed. When concerns were highly charged with emotion, the clinicians' responses were less frequently attuned to families' needs. Cues of less clearly articulated concerns gained less follow-up. Then, concerns often remained or reappeared.

Conclusion: The identified concerns and the distinction between clearly and less clearly articulated concerns may prove valuable for clinicians to improve family support. We advise clinicians to engage with a curious, probing attitude to enhance the dialogue around concerns, elaborate on less clearly articulated concerns and identify the informational needs of the family.

Keywords: Clinical ethics; Communication; Intensive care unit; Organ donation; Qualitative research.

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Conflict of interest statement

Declarations. Ethical approval: The Medical Review Ethics Committee East-Netherlands waived approval (2020–7044). The study also received approval from the local review committees of all participating hospitals. Written consent was obtained from all healthcare professionals and family members, except for three family members who provided recorded verbal consent. Informed consent was acquired from one representative on behalf of the whole family. Because some families were yet unaware of their relatives’ potential fatal diagnosis and possibility of donation, clinicians a priori informed them that the research focused on conversations within the ICU environment rather than specifically on donor conversations. Family’s verbal consent was obtained, followed several weeks later by full information, written or recorded verbal consent and the question to participate in an interview. Consent for publication: Not applicable. Conflict of interest: All authors have completed a disclosure form based on uniform ICMJE guidelines. As potential participants, donation intensivists did not have final decisional rights regarding the results and discussion sections of the manuscript. The authors have no competing interests to declare.

Figures

Fig. 1
Fig. 1
Flow chart with design of the study
Fig. 2
Fig. 2
Clinician-family interactions about concerns in the donor conversation
See this image and copyright information in PMC

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