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

Detalhes bibliográficos
Autor(a) principal: Santos, Ana João
Data de Publicação: 2023
Outros Autores: Braz, Paula, Folha, Teresa, Machado, Ausenda, Matias Dias, Carlos
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
Texto Completo: http://hdl.handle.net/10400.18/8837
Resumo: (This article belongs to the Section Global and Public Health)
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spelling Parents of Children Diagnosed with Congenital Anomalies or Cerebral Palsy: Identifying Needs in Interaction with Healthcare ServicesCongenital AnomalyCerebral PalsyParentsHealthcare ServicesHealthcare ProfessionalsEstados de Saúde e de Doença(This article belongs to the Section Global and Public Health)The 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.MDPIRepositório Científico do Instituto Nacional de SaúdeSantos, Ana JoãoBraz, PaulaFolha, TeresaMachado, AusendaMatias Dias, Carlos2024-01-04T13:03:06Z2023-06-122023-06-12T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10400.18/8837engChildren (Basel). 2023 Jun 12;10(6):1051. doi: 10.3390/children100610512227-906710.3390/children10061051info:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2024-01-06T01:34:10Zoai:repositorio.insa.pt:10400.18/8837Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-20T01:30:30.452870Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse
dc.title.none.fl_str_mv Parents of Children Diagnosed with Congenital Anomalies or Cerebral Palsy: Identifying Needs in Interaction with Healthcare Services
title Parents of Children Diagnosed with Congenital Anomalies or Cerebral Palsy: Identifying Needs in Interaction with Healthcare Services
spellingShingle Parents of Children Diagnosed with Congenital Anomalies or Cerebral Palsy: Identifying Needs in Interaction with Healthcare Services
Santos, Ana João
Congenital Anomaly
Cerebral Palsy
Parents
Healthcare Services
Healthcare Professionals
Estados de Saúde e de Doença
title_short Parents of Children Diagnosed with Congenital Anomalies or Cerebral Palsy: Identifying Needs in Interaction with Healthcare Services
title_full Parents of Children Diagnosed with Congenital Anomalies or Cerebral Palsy: Identifying Needs in Interaction with Healthcare Services
title_fullStr Parents of Children Diagnosed with Congenital Anomalies or Cerebral Palsy: Identifying Needs in Interaction with Healthcare Services
title_full_unstemmed Parents of Children Diagnosed with Congenital Anomalies or Cerebral Palsy: Identifying Needs in Interaction with Healthcare Services
title_sort Parents of Children Diagnosed with Congenital Anomalies or Cerebral Palsy: Identifying Needs in Interaction with Healthcare Services
author Santos, Ana João
author_facet Santos, Ana João
Braz, Paula
Folha, Teresa
Machado, Ausenda
Matias Dias, Carlos
author_role author
author2 Braz, Paula
Folha, Teresa
Machado, Ausenda
Matias Dias, Carlos
author2_role author
author
author
author
dc.contributor.none.fl_str_mv Repositório Científico do Instituto Nacional de Saúde
dc.contributor.author.fl_str_mv Santos, Ana João
Braz, Paula
Folha, Teresa
Machado, Ausenda
Matias Dias, Carlos
dc.subject.por.fl_str_mv Congenital Anomaly
Cerebral Palsy
Parents
Healthcare Services
Healthcare Professionals
Estados de Saúde e de Doença
topic Congenital Anomaly
Cerebral Palsy
Parents
Healthcare Services
Healthcare Professionals
Estados de Saúde e de Doença
description (This article belongs to the Section Global and Public Health)
publishDate 2023
dc.date.none.fl_str_mv 2023-06-12
2023-06-12T00:00:00Z
2024-01-04T13:03:06Z
dc.type.status.fl_str_mv info:eu-repo/semantics/publishedVersion
dc.type.driver.fl_str_mv info:eu-repo/semantics/article
format article
status_str publishedVersion
dc.identifier.uri.fl_str_mv http://hdl.handle.net/10400.18/8837
url http://hdl.handle.net/10400.18/8837
dc.language.iso.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv Children (Basel). 2023 Jun 12;10(6):1051. doi: 10.3390/children10061051
2227-9067
10.3390/children10061051
dc.rights.driver.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.publisher.none.fl_str_mv MDPI
publisher.none.fl_str_mv MDPI
dc.source.none.fl_str_mv reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
instacron:RCAAP
instname_str Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
instacron_str RCAAP
institution RCAAP
reponame_str Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
collection Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
repository.name.fl_str_mv Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
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