Introduction: Pediatric heart transplant (HTx) candidates continue to have high waitlist mortality due to donor availability. Ex-situ heart perfusion (ESHP) has the potential to increase the donor pool, yet has been used sparingly in pediatrics due to size restrictions of the current technology. Previous work has shown that for ESHP to be accepted by pediatric healthcare providers (HCP), the risks to the donor heart and the costs need to be better understood and that rigorous research and implementation oversight is essential. Perspectives from caregivers about ESHP has not been assessed and forms the basis of this qualitative study. Methods: Virtual, semi-structured interviews were conducted with caregivers of children who are awaiting or received HTx. Data were analyzed using qualitative content analysis. Results: Twelve participants from 2 countries participated in this study. Awareness about and understanding of ESHP varied among participants from complete unawareness to understanding specifics. Independent of their awareness, all purported that it was an excellent and innovative technology, and supported ESHP implementation in pediatrics. No ethical issues or concerns about the use were identified that differed from other medical technologies, although participants did state that understanding the length of time the heart can be mounted and risks to donor and recipient were important. Participants expressed various views on how to approach parents regarding ESHP. Overall, most participants stated that the consent processes should be like other medical procedure and some commented that deferred or waived consent would be acceptable, especially if ESHP became part of routine clinical practice. Even if consent was waived, participants agreed that the use of ESHP should be disclosed just like other information is disclosed about the donor heart and that introduction of ESHP should come early in the HTx journey. Conclusion: Families are supportive of the use of ESHP. Like HCPs, they endorse the need to understand the potential risks and that information should be presented early in the transplant process.
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