ABSTRACT
Parental perspective on the health, safety, and quality of life in children and adolescents with cystic fibrosis (CF). AIM OF THE STUDY: Assessment of the impact of a chronic disease such as cystic fibrosis (CF) on the quality of life and safety of children and adolescents as perceived by parents/caretakers. METHODS: The study was conducted at the Department of Lung Diseases of the Institute of Mother and Child, a branch of the Cystic Fibrosis Centre Children of Warsaw SZPZOZ in Dziekanów Lesny, the largest pediatric CF center in Poland, and in the Rodzinamuko group on Facebook. A total of 139 parents participated in the study. The study was conducted using the diagnostic survey method with the use of the Kid- & Kiddo-KINDLR questionnaire for examining the quality of life of children and adolescents and a demographic questionnaire. RESULTS: The perception of cystic fibrosis (CF) as a chronic disease varies based on parental residence and professional status. The well-being of children and adolescents with CF is tied to their parents' employment, particularly regarding schooling. Social interactions are influenced by the level of parental education. The quality of life in children and adolescents with CF is age-dependent, with younger children exhibiting higher quality of life. This age-quality of life relationship extends to physical well-being, emotional well-being, and school-related aspects. Furthermore, the emotional dimension of quality of life is affected by the child's age at the time of diagnosis. CONCLUSIONS: The Kid- & Kiddo-KINDLR QoL Questionnaire for children with cystic fibrosis is a good tool to measure parental knowledge. The study shows the need for the whole family to understand and be aware of the impact of CF on family life. Parents may be tired or may misunderstand or miscommunicate the medical team's instructions, which may affect both family life and patient safety. To ensure patient safety, parents should work with healthcare professionals at hospitals or clinics but also at home. They should also account for the family as a whole, not just for the problems of the child with CF.
