Parental Experiences and Coping Strategies of Families Caring for a Child With Cystic Fibrosis.

Abstract

Introduction: Receiving a diagnosis of cystic fibrosis (CF) is often a life-shattering experience for families. Ongoing support from healthcare professionals who understand the realities of living with CF is essential. We aimed firstly to evaluate the disease-related experiences and coping strategies of families with young children diagnosed with CF and secondly to identify the unmet needs of this vulnerable population considering the risk of developmental delays.

Methods: An in-depth interview was conducted with each child's family individually, and the researcher recorded their responses using thematic analysis. Following the qualitative interview, the ASQ was administered for developmental screening of children. Sociodemographic and disease characteristics were also recorded on the case interview form.

Results: Twenty children aged 3-72 months with CF and their families were included in the study. The main themes of parental experiences were emotions, future concerns, stigmatization, and difficulty in caregiving. Their coping strategies as themes were religious beliefs, getting help, relaxation strategies, adherence to treatment, and organizing social life. Among the children, 20% had developmental delays in at least one domain, with no differences in sociodemographic or disease characteristics compared to those without developmental delays. One had a global developmental delay requiring educational, financial, and psychological support.

Conclusions: This study describes how families develop their unique way of managing illness in the early years of life. Healthcare professionals should identify challenges and be aware of the potential actionable unmet needs of families, providing the necessary support holistically by understanding the realities of living with CF in early childhood.