*Purpose: Although post-transplant caregiver (CG) support is a prerequisite for transplant listing, research shows CG outcomes including stress and social functioning may be worse during the pre-transplant period than following transplant. However, little is known about the experiences that contribute to poor CG outcomes during the pre-transplant period. The objective of this qualitative study was to better understand the CG experience in order to determine how health care teams can support CGs during the pre-transplant period.

*Methods: Participant recruitment was through nominations by heart and lung transplant candidates on the transplant waiting list at Mayo Clinic (Rochester, MN, USA). Participants provided oral consent and were interviewed using a semi-structured interview guide. Interviews were transcribed verbatim and analyzed by two members of the study team using methods of interpretive description.

*Results: Twenty-six CGs (16 heart and 10 lung) consented. Participants were predominantly female (69.2%) and the median age was 59 years. The majority were spouses (65.4%). Major themes were related to personal well-being, caregiver burden, and interactions with the health care teams. Personal impacts included changing relationships with the patient and difficulty maintaining social and financial roles. CGs reported minimizing self-care and personal needs while putting patients’ needs first. The uncertainty of transplant timing, the geographic distance from the transplant center, and fluctuations in patients’ physical functioning, impacted CG stress and coping. Interactions with the transplant health care team were often limited to office visits that focused on the patients’ health. Social isolation was commonly reported. CGs advised maintaining a positive attitude, living in the moment, and building connections within the transplant community as effective CG coping mechanisms. CGs suggested strategies—including dedicated CG education, assistance in navigating financial or logistical issues, and availability of emotional and social support resources—to minimize CG burden and reduce stress.

*Conclusions: Interviews with CGs provided insights into factors that may contribute to high levels of stress and poor social functioning during the pre-transplant period, which is a period marked by temporal uncertainty. Socially or geographically isolated CGs in particular may require additional support. CGs’ reluctance to take the health care team’s focus away from patient needs will need to be considered in designing in-clinic or remote strategies.

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