One breath at a time: living with cystic fibrosis

The purpose of this qualitative investigation was to describe the lived experiences of families caring for a child with cystic fibrosis at the time of initial diagnosis. Phenomenological research methodology as described by Colaizzi (1978) was used to guide the investigation. A purposive sample of 9 family members voluntarily participated in the study. Data were gathered through focus groups and written narratives. Data analysis yielded 3 essential theme clusters with subthemes: Falling Apart, Pulling Together, and Moving Beyond. Within the theme of Falling Apart, the subthemes of Devastation of Diagnosis, An All-Encompassing Sense of Fear and Isolation, and An Overwhelming Sense of Guilt and Powerlessness are described. The theme of Pulling Together included the subthemes of Perpetual Vigilance and Returning to Normalcy, and the third theme of Moving Beyond included the subtheme of An Optimal Unfolding of a New Kind of Consciousness. This article describes in detail the themes and subthemes identified during data analysis and the fluid nature of the relationship that exists within the essential structure of caring for a family member with cystic fibrosis. The diagnosis of cystic fibrosis most often comes as a life-shattering experience to families. Lifestyle readjustments are made in an attempt to return to some sense of family normalcy. In order to achieve stability in their daily lives, families are vigilant in the care and monitoring of the health of a child with cystic fibrosis. Ongoing support from health care professionals that is grounded in the realities of living with cystic fibrosis is critical. This study describes how families develop their own unique way of controlling the experience of living with cystic fibrosis, one day and one breath at a time.