Characterization of portuguese pediatric patients with cystic fibrosis and their parents: Cross-sectional study [Caracterização dos doentes pediátricos portugueses com fibrose quística e dos seus pais: Estudo transversal]

• Type: Article in National Scientific Journal
• Date: 2021

Authors

Guimarães, C (Author) Other; Alexandrino, AS (Author) Other; Sarmento, JA (Author) FMUP; Azevedo, I (Author) Other

Journal

Title: Portuguese Journal of Pediatrics

ISSN: 2184-3333

Publisher: Portuguese Society of Paediatrics

Indexing

Scopus - 0 Citations

Other information

Authenticus ID: P-00T-NK4

DOI: 10.25754/pjp.2021.19722

Abstract (EN): Introduction: Cystic fibrosis is a chronic disease with multiple associated challenges, not only for the children/ adolescents but also for their parents/caregivers. To the best of the authors¿ knowledge, to this date there are no published studies characterizing the Portuguese pediatric population with cystic fibrosis. This study aims to characterize children/adolescents with cystic fibrosis concerning physiotherapy, hospitalizations in the previous year as well as medication taken in the previous two weeks. We also aimed to characterize the parents/caregivers concerning sociodemographic data, caregivers role (sleep habits, service, and work activities) and equipment sterilization habits for medication administration. Methods: Cross-sectional study with a total sample of 28 parents/caregivers and 28 children/adolescents (n = 28): 14 were females with an average age of 12.14 ± 3.99 years old. The online question forms-sample selection and characterization questionnaire and care-related quality of life-were sent to the parents/caregivers, through the Associação Portuguesa de Fibrose Quística database. Results: From the children/adolescents 69.23% (n = 18) had physiotherapy once or twice a week. Most parents/ caregivers sterilized the equipment used for medication admission (53.57%) but 33.33% considered that soap and water washing was an effective sterilization. Discussion: We found that children/adolescents with cystic fibrosis do not undergo physiotherapy at the recommended frequency. In addition, most parents/ caregivers have appropriate sterilization habits, although some of them do not have the correct information on how to perform effective sterilization. © Author(s) (or their employer(s)) and Portuguese Journal of Pediatrics 2020.

Language: English

Type (Professor's evaluation): Dissemination