Psychosocial morbidity among parents of children with congenital heart disease: A prospective longitudinal study

OBJECTIVE: The study objectives were to assess long-term psychosocial morbidity and its determinants among parents of children with congenital heart disease (PCCHD), and to compare mothers with fathers on psychosocial variables. METHOD: The study design was longitudinal. Data comprising PCCHD (n = 632, 58% were women) were collected on two occasions I year apart. RESULTS: Many PCCHD reported psychosocial problems manifested in depression (18%), anxiety (16%-18%), somatization (31%-38%), and hopelessness (16%) during both measurement points. In addition, 7% to 22% reported psychosocial problems persisting over a 1-year period. Consistently over time, mothers reported more severe symptoms of depression, anxiety, somatization, and hopelessness than fathers. Children's clinical severity did not significantly explain parent's psychosocial morbidity over time. Instead, parental caregiving burden, dissatisfaction with care, social isolation, and financial instability were associated with an increased risk of long-standing psychosocial morbidity. CONCLUSIONS: An important proportion of PCCHD are at risk of long-standing psychosocial morbidity, suggesting that psychosocial intervention may be beneficial. Feasible interventions are discussed.