Stress and burden of care in families with children commencing renal replacement therapy.

A collaborative project was initiated in two pediatric centers to examine the long-term demands and outcomes in families with children commencing renal replacement therapy. Parents returned questionnaires on stress, anxiety, depression, information needs, and intrusion factors pre, at 3 months, 6 months, and annually. A burden of care assessment (BCA) for families was devised using a scoring system based on the domains of patient, sibling, parents, environment, demands of therapy, and dialysis/transplant factors. Team members also documented medical events and family contacts. In 2 years, 38 patients (26 male) were enrolled with an age range 0.2-18.5 years. Mean stress, anxiety, and depression scores were higher in mothers than fathers, and scores were higher in parents of patients > 10 years compared to the patient group < 10 years. In families with a high initial BCA score there was a positive correlation with maternal stress and anxiety scores. Patients from families with a low BCA score had better growth performance. Older children requiring renal replacement therapy may produce more stress and intrusion for parents than younger children. Burden of care assessments may be a useful means of predicting families who require greater support from the multidisciplinary team.