Method: A national survey was conducted with 114 transplant centers, targeting both transplant center directors and key support staff (e.g., nurses, psychologists, social workers). Respondents completed a 32-item survey designed to capture the scope of caregiver assessments, availability of caregiver support services, and existing education and training initiatives.

Results: Seventy percent of transplant centers report offering 2-4 types of family caregiver support programs. While 65% of transplant centers have a written process for assessing caregiver needs, they are not comprehensively evaluated. Typically, caregiver needs are reviewed during critical events such as hospitalization, discharge, or following medical events, and these circumstances often expose unmet needs (54%). Most support services were delivered through in-system or third party, with many centers offering more medical training. Training commonly focuses on managing symptoms, medications, and adverse events while procedural training, symptoms management and meal preparation/food safety were most often requested. The data also revealed that there were role-based discrepancies when addressing caregiver needs with support staff focusing on nutrition and meal planning while directors focused less on these areas.

Conclusion: These findings highlight the need for standardized caregiver training and support services in transplant centers to better address unmet needs. Addressing role-based discrepancies in perceived needs and expanding caregiver education programs could enhance caregiver preparedness, reduce burden, and improve transplant outcomes.