Lessons from the family unit in paediatric heart transplantation: can we do better?

Paediatric heart transplantation (PHT) is the gold-standard treatment for children with end-stage heart failure. Despite advances in therapies, PHT affects the quality of life of recipients and their caregivers, regardless of frequent medical complications. In this viewpoint article, we will focus on ways to address the familial and psychosocial effects of PHT. Despite documented psychosocial needs of PHT recipients, fewer than half of programmes have access to psychology services and only 20% have integrated providers.1 The responsibility often falls on the paediatrician and transplant team to garner support for families. To do so effectively, we must define the role of the medical team, follow evidence-based psychosocial screening and intervention approaches, and advocate for adequate services to support families. Psychological concerns have been identified in a substantial proportion of PHT recipients.1 2 A major concern is social functioning, which is exacerbated by negative internalising patterns of behaviour like social withdrawal and fearfulness.2 A substantial number of recipients, around 25%, have been shown to suffer from impaired psychosocial functioning.3 Up to a quarter of PHT recipients suffer from adjustment, anxiety and depressive disorders, and adolescent recipients carry a fivefold higher likelihood of generalised anxiety compared with their healthy counterparts.4 5 Not surprisingly, generalised anxiety correlates with illness-specific anxiety, including fear of poor health outcomes (eg, risk of rejection, need for re-transplantation, other post-transplant complications).5 Psychosocial impairment is not confined to the transplant recipient. High stress levels are prevalent in caregivers, with approximately 40% of …