Beyond Survival: Child and Parent Well-Being in Pediatric Heart Failure.

Children with heart failure are at high risk of multiple hospitalizations, eventual need for heart transplant, and mortality. When at home, support and medical care are provided by parents. In this high-stakes situation, the quality of life of both the child and parents can be impacted. In recent years quality of life is increasingly relevant, as more medically complex children are now cared for at home and transplant waitlist times have lengthened. In this contemporary cohort, we conducted semi-structured interviews of dyads of children with HF and their parents, then used thematic analysis to identify quality of life themes. Among 13 dyads, 5 central themes emerged: (1) Both parents and children desire as much of a "normal" life as possible. (2) Parent responsibilities are extensive- they operate at maximum capacity in their medicalized parent role and face psychosocial challenges of their own. (3) Parents and children experience social isolation which is multifactorial and increases over time. (4) Coping methods are diverse- parents and children are resilient. (5) Specific supportive resources, in particular mental health resources, are lacking. We conclude that many opportunities exist to develop and improve program support for the pediatric HF population.