After Organ Donation: A Qualitative Inquiry of Donor Aftercare Worker Experiences, Secondary Traumatic Stress, and Well-Being

Background and Purpose: In 2024, approximately 48,000 organ transplants were performed in the United States, with an estimated 17,000 deceased organ donors. Organ Procurement Organizations (OPOs), the non-profit entities responsible for recovering organs from deceased donors, also provide aftercare services to donor families, including grief counseling, memorial events, and support groups. Aftercare workers play a vital role in supporting bereaved families and are integral to the organ donation and procurement process. Despite the essential nature of this work, there is limited research on the experiences, challenges, and strengths of aftercare workers. Additionally, there is minimal standardization across OPOs regarding the qualifications and roles of those providing aftercare and currently payors do not recognize the importance of providing these services to families and do not reimburse for them. Although social workers are well-established in many areas of medical and transplant care, their presence in donor aftercare remains limited, signaling a need to explore potential areas for greater involvement. This study aims to highlight the critical role of organ procurement organizations (OPOs) in supporting bereaved individuals and families, explore the experiences of aftercare workers, identify strengths and areas for growth in aftercare services to inform potential opportunities for social work partnership, and assess for secondary traumatic stress and well-being among aftercare workers.

Methods: This study was a cross-sectional, qualitative inquiry nested within a larger mixed methods investigation. Participants were aftercare professionals employed at an organ procurement organization in the Western United States. A total of 14 individuals completed an online survey developed by the research team, which included both open- and closed-ended questions focused on experiences providing aftercare services, secondary traumatic stress, and well-being. Descriptive statistics assessed secondary traumatic stress and well-being, while open-ended survey responses were analyzed thematically using Dedoose.

Findings:

Participants reported moderate levels of secondary traumatic stress and aftercare workers scores indicated risk for lower levels of well-being and mental distress. Aftercare workers expressed a need for additional resources, training, and emotional support to better fulfill the goals of OPO organizations. They also noted that limited staffing impacted their ability to fully support donor families throughout the aftercare process.

In addition, they emphasized the importance of ongoing training focused on grief, trauma, and communication. Beyond professional development, many workers highlighted the emotional toll of their roles and voiced a need for therapeutic support to maintain their own well-being.

Conclusion and Implications:

This study found that donor aftercare workers experience considerable burden and could benefit from ongoing emotional support services. Healthcare social workers, who are accustomed to working on interdisciplinary teams, are well-equipped to contribute to donor aftercare settings along with the range of professionals who currently provide care. Despite their limited presence in organ procurement aftercare teams, their training makes them strong candidates for these roles. As healthcare social workers become more integrated across the chronic care continuum, there is increasing potential to expand their clinical presence in donor aftercare services.