Building life skills for children with cystic fibrosis: effectiveness of an intervention

Abstract

Background: With improved survival and the transformation in the course of cystic fibrosis (CF), there is a need to develop interventions to help children balance the physiologic and functional health demands of CF with psychosocial and developmental needs before the downward trajectory of CF intensifies in adolescence.

Objective: The aim of this study was to test the effectiveness of an intervention to improve psychosocial adjustment, functional health, and physiologic health in children (8-12 years of age) with CF by teaching them life skills for managing their chronic illness in their everyday lives.

Methods: A two-group, experimental, repeated-measures design was used to compare 116 children with CF randomly assigned to intervention and usual care groups at baseline and at 3, 6, and 9 months post-intervention using repeated measures multivariate analysis of variance. Children received an individual, tailored intervention during a home visit and a structured group intervention. Four instruments were used to measure psychosocial health status: Perceived Illness Experience Scale, Self-Perception Profile for Children, Social Support Scale for Children, and Children's Loneliness Scale. Functional health status was measured with the Functional Disability Inventory for Children. Physiologic status was assessed as pulmonary function (FEV1%) and physical growth.

Results: Compared with children in the usual care group, the participants demonstrated decreased perceived impact of illness (p < .0001) and decreased loneliness (p < .0001). At 9 months, the improvements were maintained for impact of illness (p = .01) and loneliness (p = .01), remaining significantly different from baseline.

Conclusion: This developmentally appropriate, problem-solving, and social skills intervention has promise for decreasing the social consequences of chronic illness (CF) in children's lives.