173 - “Building a Legacy”: Parents’ views about autopsy, organ donation, and research donation after neonatal death

Poster Number: 173
Publication Number: 173.234

Elizabeth E. Crouch, University of California, San Francisco, School of Medicine, San Francisco, CA, United States; Carlos A. Damas, UCSF Benioff Children's Hospital San Francisco, San Francisco, CA, United States; Cody Bartrug, UCSF Benioff Children's Hospital San Francisco, San Francisco, CA, United States; Anne C. Shamiyeh, HAND, San Francisco, CA, United States; Summer Segal, University of California, San Francisco, School of Medicine, San Francisco, CA, United States; Dawn Gano, University of California, San Francisco, School of Medicine, San Francisco, CA, United States; Meghan Scelfo, University of California, San Francisco, School of Medicine, Redwood City, CA, United States; Linda S. Franck, University of California, School of Nursing, San Francisco, CA, United States

Background: Families whose infants die in the Neonatal Intensive Care Unit (NICU) may be asked about autopsy, organ donation, and research tissue donation. Understanding how parents experience these often difficult but important conversations could inform communication guidelines and training for healthcare teams.

Objective: We aimed to explore perspectives from parents who had experienced neonatal loss about autopsy, organ donation, and tissue donation for research.

Design/Methods: We conducted three two-session virtual focus groups with parents who attended local support group, co-facilitated by a researcher and parent bereavement specialist from Helping After Neonatal Death (HAND). The recorded sessions were transcribed, coded and analyzed using a grounded theory-informed approach by the research team that included parents with experience of neonatal loss.

Results: 14 parents participated in the focus groups. The first main theme centered on the importance of offering parents the option to donate or not, rather than pre-judging who would or would not be interested. A second main theme related to the context of the request, specifically the who, how and when the request for autopsy or organ/tissue donation is communicated. Facilitators of communication included a prior relationship and rapport with the requestor, using the baby’s name and sensitive approach in introducing the topic, and hearing about the range of decisions other families have responded in similar circumstances. A third theme included heath system recommendations for improving communication, including written information for parents, which was recommended to be provided as early as possible (even prior to delivery, if a life-threatening diagnosis), and communications training for healthcare professionals. Finally, parents who had agreed to organ or tissue donation described how the donation helped them to feel that their child’s life had meaning and that they were “building a legacy” to honor their child’s memory, which also helped with grief and coping with their loss. See Table 1 for example quotes for each theme.Conclusion(s): Parents who experienced neonatal loss endorsed the importance of offering parents the choice of autopsy, organ or research donation with skillful and empathetic communication. Parents provided practical recommendations to improve how the request is made and to empower families to honor their child’s life. Future areas of research include exploring the perspectives of NICU staff and families whose primary language is not English.
Table 1: Main themes and example quotesExample quotes for each theme.