Abstract
BACKGROUND: Organ and tissue donation and transplantation (OTDT) policies and practices lead to differential care for sexual and gender minorities (SGMs). The experiences of SGM patients and caregivers in the transplantation system have not been published. The perspectives of SGMs on how to best address existing inequities are not understood. OBJECTIVE: To characterize the lived experiences of SGM patients and caregivers in solid-organ transplant health systems, as well as the perspectives and priorities of these individuals regarding SGM-relevant policies, practices and targets for system improvements. METHODS: We conducted a series (N = 12) of one-on-one semi-structured interviews with a convenience sample of SGMs with lived experience of the OTDT system. We transcribed interviews verbatim and performed a formal qualitative analysis combining a best-fit framework synthesis and inductive thematic analysis. RESULTS: We revealed novel targets for action to improve inclusive care in the transplantation system directly informed by the lived experiences of SGM patients and caregivers. Targets for improvement included (1) enhancements to shared decision-making between OTDT providers and patients, (2) transparent communication from OTDT organizations, (3) data-driven donor risk assessments, (4) expanded healthcare worker training, (5) inclusive physical care spaces, (6) recommendations for transgender and gender-diverse health system planning, (7) integrated sexual and reproductive healthcare services for transplant recipients, (8) increased SGM representation in medical education and care settings, (9) SGM and OTDT intersectional support networks, and (10) structural facilitation of SGM community advocacy efforts. LIMITATIONS: While thematic saturation was achieved with our sample, we recognize that not all SGM identities were represented. It remains likely that additional experiences, beliefs, and priorities exist in the SGM community. CONCLUSIONS: The emergent priorities and perspectives of SGMs with lived experience of transplant systems should inform patient-centered equitable health system advancements.