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

Abstract

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. 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). 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. 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.