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Parents of Children Diagnosed with Congenital Anomalies or Cerebral Palsy: Identifying Needs in Interaction with Healthcare Services

2023-06-12Journal article Open access
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dc.contributor.authorSantos, Ana João
dc.contributor.authorBraz, Paula
dc.contributor.authorFolha, Teresa
dc.contributor.authorMachado, Ausenda
dc.contributor.authorMatias Dias, Carlos
dc.date.accessioned2024-01-04T13:03:06Z
dc.date.available2024-01-04T13:03:06Z
dc.date.issued2023-06-12
dc.description(This article belongs to the Section Global and Public Health)pt_PT
dc.description.abstractThe changes deriving from the birth of a child with a congenital anomaly (CA) or cerebral palsy (CP) imply, in many cases, an increased interaction with health services. A cross-sectional descriptive study was conducted with a convenience sample of parents of children diagnosed with four groups of CA (severe heart anomalies, spina bifida, orofacial clefts, and Down syndrome) and/or CP. A semistructured online questionnaire to be answered by parents was sent by web link to focal points of five parent associations and professional institutions. Data were analyzed through thematic content analysis (open-ended questions) and descriptive analysis (closed-ended questions). The results indicate consistency of responses of parents of children diagnosed with different conditions, namely with respect to the perception of health services and professionals. Closed and open-ended responses indicated three main topics in the interaction between health services and parenthood: information, coordinated and integrated responses, and support. The less positive outcomes suggest unmet information needs, while positive aspects include confidence in the care provided and the “training” received from health professionals.pt_PT
dc.description.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.citationChildren (Basel). 2023 Jun 12;10(6):1051. doi: 10.3390/children10061051pt_PT
dc.identifier.doi10.3390/children10061051pt_PT
dc.identifier.issn2227-9067
dc.identifier.urihttp://hdl.handle.net/10400.18/8837
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherMDPIpt_PT
dc.relation.publisherversionhttps://www.mdpi.com/2227-9067/10/6/1051pt_PT
dc.subjectCongenital Anomalypt_PT
dc.subjectCerebral Palsypt_PT
dc.subjectParentspt_PT
dc.subjectHealthcare Servicespt_PT
dc.subjectHealthcare Professionalspt_PT
dc.subjectEstados de Saúde e de Doençapt_PT
dc.titleParents of Children Diagnosed with Congenital Anomalies or Cerebral Palsy: Identifying Needs in Interaction with Healthcare Servicespt_PT
dc.typejournal article
dspace.entity.typePublication
oaire.citation.conferencePlaceBasel, Switzerlandpt_PT
oaire.citation.issue6pt_PT
oaire.citation.startPage1051pt_PT
oaire.citation.titleChildrenpt_PT
oaire.citation.volume10pt_PT
person.familyNameCarvalho da Silva Santos
person.familyNameBraz
person.familyNamefolha
person.familyNameMachado
person.familyNameMatias Dias
person.givenNameAna João
person.givenNamePaula
person.givenNameteresa
person.givenNameAusenda
person.givenNameCarlos
person.identifier.ciencia-id7E12-E842-1216
person.identifier.ciencia-id1217-6076-5D88
person.identifier.ciencia-id6311-6117-ADEB
person.identifier.orcid0000-0003-0556-5513
person.identifier.orcid0000-0003-3043-2827
person.identifier.orcid0000-0002-0437-2675
person.identifier.orcid0000-0002-1849-1499
person.identifier.orcid0000-0002-0206-5874
person.identifier.ridI-6335-2012
person.identifier.scopus-author-id23103292400
rcaap.embargofctPolítica de acesso de acordo com a política editorial da revista.pt_PT
rcaap.rightsopenAccesspt_PT
rcaap.typearticlept_PT
relation.isAuthorOfPublication7b015568-111e-4298-94af-90f1d3a958e4
relation.isAuthorOfPublicationa9cd25a1-e308-4175-9338-802416a5a706
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relation.isAuthorOfPublication544ad266-0c22-4a50-9ebc-86acc08d6666
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relation.isAuthorOfPublication.latestForDiscoverya9cd25a1-e308-4175-9338-802416a5a706

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