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

2021-01-03Journal article Restricted access
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dc.contributor.authorGuimarães, Catarina
dc.contributor.authorAlexandrino, Ana Silva
dc.contributor.authorSarmento, João Antunes
dc.contributor.authorAzevedo, Inês
dc.date.accessioned2022-04-12T08:33:29Z
dc.date.available2022-04-12T08:33:29Z
dc.date.issued2021-01-03
dc.description.abstractCystic 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.pt_PT
dc.description.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.citationGuimarães, 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.pt_PT
dc.identifier.eissn2184-4453
dc.identifier.issn2184-3333
dc.identifier.urihttp://hdl.handle.net/10400.22/20352
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherSPPpt_PT
dc.subjectCystic fibrosispt_PT
dc.subjectSmoke habitspt_PT
dc.subjectPhysiotherapypt_PT
dc.subjectSterilizationpt_PT
dc.subjectPediatric populationpt_PT
dc.titleCharacterization of the Portuguese pediatric population with Cystic Fibrosis and their parents: cross-sectional studypt_PT
dc.typejournal article
dspace.entity.typePublication
oaire.citation.endPage20pt_PT
oaire.citation.startPage11pt_PT
oaire.citation.titlePortuguese Journal of Pediatricspt_PT
oaire.citation.volume52pt_PT
person.familyNameGuimarães
person.familyNameAlexandrino
person.givenNameCatarina
person.givenNameAna Silva
person.identifier.ciencia-id6318-F6E6-FAB8
person.identifier.ciencia-idE213-85E6-716F
person.identifier.orcid0000-0001-6262-3738
person.identifier.orcid0000-0001-8146-6950
person.identifier.scopus-author-id57110502100
rcaap.rightsclosedAccesspt_PT
rcaap.typearticlept_PT
relation.isAuthorOfPublication8dc03728-1d7e-44b8-97ed-c92b3f867158
relation.isAuthorOfPublication1a3a8a6c-815d-49b0-bd3b-6db516fafd25
relation.isAuthorOfPublication.latestForDiscovery8dc03728-1d7e-44b8-97ed-c92b3f867158

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