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Advisor(s)
Abstract(s)
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.
Description
Keywords
Cystic fibrosis Smoke habits Physiotherapy Sterilization Pediatric population
Citation
Guimarães, C., Alexandrino, A. S., Sarmento, J. A., & Azevedo, I. (2021). Characterization of the Portuguese pediatric population with Cystic Fibrosis and their parents: cross-sectional study. Portuguese Journal of Pediatrics, 52(1), 11-20.