The Impact of the Coordination between Healthcare and Educational Personnel on the Health and Inclusion of Children and Adolescents with Rare Diseases

Rare diseases produce multiple impacts for the people who suffer from them, but they also have repercussions for their families, education and healthcare. The objective of this study is to analyze the coordination between healthcare and education professionals who intervene with children and adolesc...

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Detalles Bibliográficos
Autores: Verger, Sebastia, Negre, Francisca, Fernandez-Hawrylak, Maria, Paz-Lourido, Berta
Tipo de recurso: artículo
Fecha de publicación:2021
País:España
Institución:Conselleria de Salut i Consum del Govern de les Illes Balears
Repositorio:Docusalut
Idioma:inglés
OAI Identifier:oai:docusalut.com:20.500.13003/19860
Acceso en línea:https://hdl.handle.net/20.500.13003/19860
Access Level:acceso abierto
Palabra clave:Child
Health Personnel
Rare Diseases
Humans
Adolescent
Qualitative Research
Educational Personnel
Delivery of Health Care
Atención a la Salud
Humanos
Investigación Cualitativa
Niño
Personal de Salud
Enfermedades Raras
Adolescente
Personal Docente
communication
interprofessional coordination
rare diseases
pediatrics
educational inclusion
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spelling The Impact of the Coordination between Healthcare and Educational Personnel on the Health and Inclusion of Children and Adolescents with Rare DiseasesVerger, SebastiaNegre, FranciscaFernandez-Hawrylak, MariaPaz-Lourido, BertaChildHealth PersonnelRare DiseasesHumansAdolescentQualitative ResearchEducational PersonnelDelivery of Health CareAtención a la SaludHumanosInvestigación CualitativaNiñoPersonal de SaludEnfermedades RarasAdolescentePersonal Docentecommunicationinterprofessional coordinationrare diseasespediatricseducational inclusionRare diseases produce multiple impacts for the people who suffer from them, but they also have repercussions for their families, education and healthcare. The objective of this study is to analyze the coordination between healthcare and education professionals who intervene with children and adolescents with rare diseases. It is a qualitative study designed with a critical paradigm, and it was carried out through focus group discussions. A total of 50 people participated in the study, including healthcare professionals, teachers and families. The results suggest that poor communication and coordination negatively impact minors with rare diseases, placing an extra burden on their families, who take on an intermediary role in communication. Participants in the study recognized coordination as an area for improvement as it can compromise equitable social and health services and inclusive education. Other measures must also be put into action at the public administration level not only to establish protocols for intersectoral coordination, but also to increase the knowledge and awareness of staff involved in health and education interventions for children with rare diseases.MDPI20212021-06-0120212021-06-01research articlehttp://purl.org/coar/resource_type/c_2df8fbb1info:eu-repo/semantics/articleapplication/pdfhttps://hdl.handle.net/20.500.13003/19860reponame:Docusalutinstname:Conselleria de Salut i Consum del Govern de les Illes BalearsInglésengopen accesshttp://purl.org/coar/access_right/c_abf2Attribution 4.0 Internationalhttp://creativecommons.org/licenses/by/4.0/info:eu-repo/semantics/openAccessoai:docusalut.com:20.500.13003/198602026-06-22T12:44:07Z
dc.title.none.fl_str_mv The Impact of the Coordination between Healthcare and Educational Personnel on the Health and Inclusion of Children and Adolescents with Rare Diseases
title The Impact of the Coordination between Healthcare and Educational Personnel on the Health and Inclusion of Children and Adolescents with Rare Diseases
spellingShingle The Impact of the Coordination between Healthcare and Educational Personnel on the Health and Inclusion of Children and Adolescents with Rare Diseases
Verger, Sebastia
Child
Health Personnel
Rare Diseases
Humans
Adolescent
Qualitative Research
Educational Personnel
Delivery of Health Care
Atención a la Salud
Humanos
Investigación Cualitativa
Niño
Personal de Salud
Enfermedades Raras
Adolescente
Personal Docente
communication
interprofessional coordination
rare diseases
pediatrics
educational inclusion
title_short The Impact of the Coordination between Healthcare and Educational Personnel on the Health and Inclusion of Children and Adolescents with Rare Diseases
title_full The Impact of the Coordination between Healthcare and Educational Personnel on the Health and Inclusion of Children and Adolescents with Rare Diseases
title_fullStr The Impact of the Coordination between Healthcare and Educational Personnel on the Health and Inclusion of Children and Adolescents with Rare Diseases
title_full_unstemmed The Impact of the Coordination between Healthcare and Educational Personnel on the Health and Inclusion of Children and Adolescents with Rare Diseases
title_sort The Impact of the Coordination between Healthcare and Educational Personnel on the Health and Inclusion of Children and Adolescents with Rare Diseases
dc.creator.none.fl_str_mv Verger, Sebastia
Negre, Francisca
Fernandez-Hawrylak, Maria
Paz-Lourido, Berta
author Verger, Sebastia
author_facet Verger, Sebastia
Negre, Francisca
Fernandez-Hawrylak, Maria
Paz-Lourido, Berta
author_role author
author2 Negre, Francisca
Fernandez-Hawrylak, Maria
Paz-Lourido, Berta
author2_role author
author
author
dc.contributor.none.fl_str_mv
dc.subject.none.fl_str_mv Child
Health Personnel
Rare Diseases
Humans
Adolescent
Qualitative Research
Educational Personnel
Delivery of Health Care
Atención a la Salud
Humanos
Investigación Cualitativa
Niño
Personal de Salud
Enfermedades Raras
Adolescente
Personal Docente
communication
interprofessional coordination
rare diseases
pediatrics
educational inclusion
topic Child
Health Personnel
Rare Diseases
Humans
Adolescent
Qualitative Research
Educational Personnel
Delivery of Health Care
Atención a la Salud
Humanos
Investigación Cualitativa
Niño
Personal de Salud
Enfermedades Raras
Adolescente
Personal Docente
communication
interprofessional coordination
rare diseases
pediatrics
educational inclusion
description Rare diseases produce multiple impacts for the people who suffer from them, but they also have repercussions for their families, education and healthcare. The objective of this study is to analyze the coordination between healthcare and education professionals who intervene with children and adolescents with rare diseases. It is a qualitative study designed with a critical paradigm, and it was carried out through focus group discussions. A total of 50 people participated in the study, including healthcare professionals, teachers and families. The results suggest that poor communication and coordination negatively impact minors with rare diseases, placing an extra burden on their families, who take on an intermediary role in communication. Participants in the study recognized coordination as an area for improvement as it can compromise equitable social and health services and inclusive education. Other measures must also be put into action at the public administration level not only to establish protocols for intersectoral coordination, but also to increase the knowledge and awareness of staff involved in health and education interventions for children with rare diseases.
publishDate 2021
dc.date.none.fl_str_mv 2021
2021-06-01
2021
2021-06-01
dc.type.none.fl_str_mv research article
http://purl.org/coar/resource_type/c_2df8fbb1
dc.type.openaire.fl_str_mv info:eu-repo/semantics/article
format article
dc.identifier.none.fl_str_mv https://hdl.handle.net/20.500.13003/19860
url https://hdl.handle.net/20.500.13003/19860
dc.language.none.fl_str_mv Inglés
eng
language_invalid_str_mv Inglés
language eng
dc.rights.none.fl_str_mv open access
http://purl.org/coar/access_right/c_abf2
Attribution 4.0 International
http://creativecommons.org/licenses/by/4.0/
dc.rights.openaire.fl_str_mv info:eu-repo/semantics/openAccess
rights_invalid_str_mv open access
http://purl.org/coar/access_right/c_abf2
Attribution 4.0 International
http://creativecommons.org/licenses/by/4.0/
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:Docusalut
instname:Conselleria de Salut i Consum del Govern de les Illes Balears
instname_str Conselleria de Salut i Consum del Govern de les Illes Balears
reponame_str Docusalut
collection Docusalut
repository.name.fl_str_mv
repository.mail.fl_str_mv
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score 15,811543

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