Cystic Fibrosis: Adolescent and Maternal Concerns About Hospital and Home Care

Abstract

The purpose of this study was to describe problems occurring in adolescents with cystic fibrosis that related to home or hospital care, maternal concerns, and the role of the health-care professional in promoting care. Forty-question semistructured interviews of adolescents (N = 20) and their mothers (N = 12) were used. Interrater reliability (90%) was established through analysis of 8 audiotaped interviews and agreement on content analysis of the 32 interviews. Results are discussed according to five categories of concerns identified by adolescents: (a) knowledge deficits, (b) self-care/decision making, (c) home care management, (d) hospital care management, and (e) suggestions for health professionals. Mothers described six categories of concern: (a) fear, (b) effect on self, (c) disruption of family life, (d) health-care management at home, (e) health-care management in the hospital, and (f) suggestions for health professionals.