Growing Up With Chronic Illness: Psychosocial Adjustment of Children and Adolescents With Cystic Fibrosis

Abstract

This chapter reviews the published research from 1980 through 2001 on the psychosocial adjustment of children and adolescents with cystic fibrosis. The inclusion criteria were that research was conducted by nurses and researchers from related disciplines that focused on the psychosocial adjustment of children (6 to 12 years) and/or adolescents (13 to 22 years) with cystic fibrosis (CF). Three computerized databases were used for retrieval: Cumulative Index of Nursing and Allied Health Literature (CINAHL), Medline, and PsycINFO. Of the 74 citations published from 1980 through 2001, only 20 studies met the inclusion criteria, including 7 nursing research studies and 13 studies published by non-nurses in related disciplines. Key findings from this review were that the focus of nursing research was on the social consequences of chronic illness, while the non-nursing research focused on self-concept, self-worth, and psychiatric symptoms of anxiety, worry, and behavior problems. Only two programs of research were identified. Developmental science was used as a guiding framework for the critique of the research. Recommendations for future research include developmentally sensitive longitudinal studies to track developmental change and stability over time, as well as research that captures individual developmental differences.