‘It Just Wears You Down’: A Qualitative Exploration of the Experiences and Wellness Needs of Organ Transplant Caregivers to Inform the Development of Support Resources

Background/Objectives: Caregivers play a critical role in patient care across the pre- and post-transplant periods. However, the demands of caregiving can negatively impact caregivers’ own physical and psychosocial well-being. The Transplant Wellness Program (TWP) is a behavior change intervention that provides exercise support for pre- and post-kidney, pre- and post-liver, and post-lung transplant patients but has not yet included transplant caregivers. Thus, the purpose of this study was to explore the experiences and needs of organ transplant caregivers to inform the development of caregiver-specific support resources for the TWP. Methods: Semi-structured interviews with family caregivers of patients receiving kidney or liver transplant in the TWP were conducted and recorded via Zoom. Interview recordings were transcribed verbatim and analyzed using conventional content analysis. Results: Eight interviews were conducted, with caregivers in both the pre- (n = 4) and post-transplant (n = 4) periods. Four categories resulted from the data: caregiver strain, life changes, individual wellness needs, and caregiving needs. Nine sub-categories further described caregivers’ experiences and opportunities for wellness support. Conclusions: The caregiving experience was characterized by feelings of overwhelm, stress, and uncertainty. This study highlights the need for comprehensive services such as exercise classes, peer support programs, and tangible aide to support transplant caregivers’ well-being. Three caregiver resources were built out of this study and integrated into the TWP.