Introduction: Each of the 55 U.S. organ procurement organizations (OPOs) is responsible for obtaining authorization for donation and supporting donor families through the donation process. While federal regulations mandate certain responsibilities related to authorization and coordination, there is no regulatory requirement that OPOs provide services to families after donation. Nonetheless, most OPOs have developed “aftercare” programs, which historically have focused on honoring loved ones, commemorating donation, and offering limited grief-related support. However, the structure, scope, and intensity of these programs vary widely, and there has been little national attention to standardizing or modernizing aftercare efforts.
Methods: We conducted semi-structured interviews with staff from 22 of the 55 U.S. OPOs to examine the structure and scope of their aftercare programs. Interviews explored grief support services, data collection practices, mechanisms for donor family feedback, and perceived delivery challenges. All interviews were audio-recorded, transcribed verbatim, and analyzed using thematic analysis. Two independent coders reviewed and coded transcripts iteratively to identify key themes, resolving discrepancies through discussion and consensus.
Results: Interviews revealed substantial heterogeneity in the structure and delivery of OPO aftercare programs, with notable variation in program duration, frequency and mode of communication, data practices, and support services. Donor family grief needs were described as highly individualized, shaped by factors such as family composition, language, social determinants of health, and donation circumstances. Participants expressed differing views on formal bereavement assessment tools, reflecting tension between the desire for standardized approaches and the recognition of grief as a personal experience.
Common barriers to effective aftercare included limited access to mental health resources, low survey response rates, insufficient staffing or funding, and fragmentation between initial and long-term support teams. Facilitators of meaningful aftercare included peer connection efforts, standardized data processes, and tailoring services to diverse family needs.
Conclusions: These findings highlight wide variability in aftercare service delivery across U.S. OPOs and the complex, evolving needs of donor families. Despite the absence of mandates, many OPOs are committed to supporting families beyond donation. Strengthening aftercare programs will require improved resources, standardized data collection, and flexible models that honor grief’s individuality. A national framework could help ensure consistent, compassionate, and equitable support for all donor families.