Characterization of the Portuguese pediatric population with Cystic Fibrosis and their parents: cross-sectional study

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

Authors

Guimarães, Catarina (Author) Other; Alexandrino, Ana Silva (Author) Other; Sarmento, João Antunes (Author) Other; Inês Azevedo (Author) FMUP

Journal

Title: Portuguese Journal of Pediatrics

Vol. 52

ISSN: 2184-3333

Publisher: Portuguese Society of Paediatrics

Other information

Authenticus ID: P-010-P06

Abstract (EN): 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. To characterize children/adolescents with Cystic Fibrosis in terms of: physiotherapy, hospitalizations in 2018, as well as medication taken in the previous two weeks. We also aimed to characterize the parents/caregivers in terms of sociodemographic data, caregivers¿ role (sleep habits, service and work activities) and equipment sterilization habits for medication administration.  Cross-sectional study with a total sample of 28 parents/caregivers and 28 children/adolescents (n=28) - 14 were female with an average age of 12,14 ± 3,99 years old. The online question forms ¿ Sample Selection and Characterization Questionnaire and CarerQol - were sent to the parents/caregivers, through the Portuguese Association of Cystic Fibrosis database. Results: 69.23% (n=18) children/adolescents 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. We found that children/adolescents with Cystic Fibrosis do not undergo physiotherapy at the recommended frequency. Also, most parents/caregivers have appropriate sterilization habits, although some of them do not have the correct information on how to perform effective sterilization.

Language: English

Type (Professor's evaluation): Scientific