Psychological and Social Aspects of Pediatric Cardiac Disease Kathleen Mussatto, Elisabeth M.W.J Utens Abstract Dramatically improved survival and reduced morbidity for virtually all forms of pediatric cardiac disease have now shifted focus to the question of quality as opposed to quantity of life The cumulative effects of the stress of pediatric cardiac disease may impact on psychosocial function and quality of life for the child, parents, siblings, and other family members Keywords Quality of life; Mental health; Social adjustment; Family; Siblings; Child development; Parents Introduction What outcomes really matter to patients, families, and societies living with the implications of congenital and acquired pediatric cardiac disease? Survival and physiologic function are certainly paramount Dramatically improved survival and reduced morbidity for virtually all congenital and acquired pediatric heart lesions have now shifted focus to the question of quality versus quantity of life The patients whom we follow are not “hearts”; they are children and young adults, incredibly complex and multidimensional, and they belong to families of equal complexity Chronic illness in a child results in psychological stress, not only for the affected child but also for the parents, siblings, caregivers, and social contacts with whom that child interacts The cumulative effects of the stress of pediatric cardiac disease may impact psychosocial function and quality of life for this whole spectrum of familial and social contacts The complicated process of adjustment to this stress involves an interaction of both risk and resistance factors and, above all, a highly subjective, personal interpretation of the impact of disease on one's life In general, children and families are incredibly resilient They respond to the challenges of chronic disease with a process of adjustment and adaptation that most commonly results in successful normalization and integration into society When this process does not occur successfully, a host of problems can result, including psychopathology, reduced quality of life, family disruption, and social issues.1–5 Providers of health care to children with pediatric cardiac disease, as well as other social contacts such as teachers, social workers, and play therapists, are in a unique position to assess and intervene with the intention of optimizing the adaptation of the child and the family Currently, the vast majority of congenital cardiac conditions are diagnosed in the antenatal period or early infancy, and the majority of surgical reconstructive procedures are conducted during the first year of life.6–9 Only a small portion of congenital cardiac conditions are completely cured despite anatomic repair In the majority of patients, particularly those with complex lesions, the cardiac malformation results in a chronic condition that requires ongoing medical monitoring and intervention In contrast, acquired pediatric cardiac disease in a previously healthy child can be diagnosed at any age The nature of the heart as an organ vital to survival may result in perceptions ... Dramatically improved survival and reduced morbidity for virtually all forms of pediatric cardiac disease have now shifted focus to the question of quality as opposed to quantity of life The cumulative effects of the stress of pediatric cardiac disease may impact on psychosocial function and quality... implications of congenital and acquired pediatric cardiac disease? Survival and physiologic function are certainly paramount Dramatically improved survival and reduced morbidity for virtually all congenital and acquired pediatric heart lesions have now shifted focus to the question of quality... siblings, caregivers, and social contacts with whom that child interacts The cumulative effects of the stress of pediatric cardiac disease may impact psychosocial function and quality of life for this whole spectrum of familial and