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

Area of Science:

• Medical Ethics
• Grief Counseling
• Healthcare Communication

Background:

• Family concerns in organ and tissue donation are vital but under-researched in real-time.
• Previous research has not captured the dynamic emergence and manifestation of these concerns during the donation process.

Purpose of the Study:

• To explore family concerns in real-time during the organ donation process.
• To understand how these concerns manifest during and after donor conversations.
• To analyze clinician responses to family concerns during these conversations.

Main Methods:

• Qualitative embedded multiple-case study across eight Dutch hospitals.
• Thematic analysis of 29 audio-recorded donor conversations and 24 family interviews.
• Direct observations of family-clinician interactions during the donation process.

Main Results:

• Six main concern topics emerged: relative's death, dying well, donation fears, time perception, procedural clarity, and family involvement.
• Concerns related to the life-event of death and dying well were most frequent.
• Clinicians often provided information or solutions, but emotional or less articulated concerns received less attuned responses, leading to unresolved issues.

Conclusions:

• Identified concerns and the distinction between clearly and less clearly articulated concerns can enhance clinician support.
• Clinicians are advised to adopt a curious, probing approach to deepen dialogue.
• Focusing on less clearly articulated concerns and identifying families' informational needs is recommended to improve support.