Parents' Knowledge of the Impact of Cystic Fibrosis on the Quality of Life of Children and Adolescents Suffering from This Disease as an Element of Patient Safety

Grażyna Dykowska; Ewa Śmigrocka; Urszula Borawska-Kowalczyk; Dorota Sands; Zofia Sienkiewicz; Anna Leńczuk-Gruba; Damian Gorczyca; Mariola Głowacka

doi:10.3390/jcm12165214

Parents' Knowledge of the Impact of Cystic Fibrosis on the Quality of Life of Children and Adolescents Suffering from This Disease as an Element of Patient Safety

J Clin Med. 2023 Aug 10;12(16):5214. doi: 10.3390/jcm12165214.

Authors

Grażyna Dykowska¹, Ewa Śmigrocka², Urszula Borawska-Kowalczyk^{2

3}, Dorota Sands^{2

3}, Zofia Sienkiewicz⁴, Anna Leńczuk-Gruba⁴, Damian Gorczyca⁵, Mariola Głowacka⁶

Affiliations

¹ Department of Health Economics and Medical Law, Faculty of Health Sciences, Medical University of Warsaw, 02-091 Warsaw, Poland.
² Cystic Fibrosis Department, Institute of Mother and Child, 01-211 Warsaw, Poland.
³ Cystic Fibrosis Center, Children's Hospital in Dziekanów Leśny, 05-092 Warsaw, Poland.
⁴ Department of Nursing, Social and Medical Development, Medical University of Warsaw, 02-091 Warsaw, Poland.
⁵ Medical Faculty, Lazarski University, 02-662 Warsaw, Poland.
⁶ The Mazovian Academy in Płock, 08-110 Płock, Poland.

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 Leśny, 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.

Keywords: child; cystic fibrosis (CF); parents; quality of life; safety.

Grants and funding

This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.