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A Family-Centered Educational Program to Promote Independence in Pediatric Heart Transplant Recipients

regimen after transplantation is prevalent (32% among kidney recipients, 31% among liver recipients, and 16% among heart recipients) and shortens the lives of many adolescent recipients.1 Characteristic adolescent risk-taking behavior, including nonadherence with prescribed medications, can be life-threatening for transplant recipients.2-4 Recent research shows that a supportive environment and knowledge of medications significantly increases self-responsibility among adolescent heart recipients.5 Yet, parents of pediatric heart transplant recipients experience significant levels of parenting stress, some to the degree of meeting criteria for posttraumatic stress disorder, making it difficult for them to support their child’s quest for independence.6 Suggestions for managing nonadherence in teens include providing them and their parents with adequate information about medications, talking with and listening to teens about problems with medications, and taking a direct, open approach with pediatric recipients.2-4 In previous research, we determined that (a) adolescent and young adult heart recipients at Childrens’ Hospital of Pittsburgh, University of Pittsburgh Medical Center (CHP) who assume ownership of the transplant and incorporate it into their self-images are more mature and independent and are better adherers with better outcomes; (b) forming mature relationships is crucial to maturity and independence, relationships developed in adolescence and early adulthood mirror those developed in childhood with family members, and (c) pediatric recipients crave information about transplantation.7,8 In many real-life clinical situations, most education of pediatric transplant candidates and their families about transplantation occurs when the child is A family-centered educational program to promote independence in pediatric heart transplant recipients