Transitioning Care of an Adolescent With Cystic Fibrosis

Abstract

This qualitative study explored the experience of parents and adolescents living with cystic fibrosis prior to the transfer of the adolescent’s care from a pediatric to an adult health care facility. Semistructured interviews were conducted with seven families receiving care from a specialized cystic fibrosis clinic; parents and adolescents were interviewed separately, followed by a group interview with members of a health care team comprising eight professionals from the clinic. Interviews were analyzed through a systemic lens which accounts for interaction and reciprocity in relationships. The parents’ experience was marked by suffering and uncertainty that remained unexpressed to the health care team, even though team members had known the family since the child was first diagnosed. Findings led to identifying a systemic hypothesis that accounted for the interactions and relational processes between parents and the health care team. This hypothesis may guide the development of systemic family nursing interventions that target this complex, relational, transition process.