title: Stress and burden of care in families with children commencing renal replacement therapy.
abstract: 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.
authors.affiliation: Paediatric Renal Unit, City Hospital, Nottingham, U.K.
authors.forename: A R
authors.initials: AR
authors.lastname: Watson
mesh_terms: D000293:Adolescent; D001007:Anxiety / Q000209:etiology; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D003863:Depression / Q000209:etiology; D005190:Family; D005260:Female; D006801:Humans; D007223:Infant; D007676:Kidney Failure, Chronic / Q000523:psychology* / Q000628:therapy; D008297:Male; D010290:Parents / Q000523:psychology; D017582:Renal Replacement Therapy / Q000523:psychology*; D013315:Stress, Psychological / Q000209:etiology*