Efficacy of the Paediatrics Palliative Care Team of Murcia according to the experience of the parents

Introduction: The care at the end of children's lives must be sensitive to the needs of the child and their family. An understanding of the illness is required from the perspective of parents faced with the death of their child, in order to improve quality and guide the development of end-of-li...

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Autores: Fornieles, MP, Barbero, PGM, Minarro, AMG, Barbieri, G, Bellavia, N, Cortes, MDB, Mingorance, AN
Tipo de recurso: artículo
Estado:Versión publicada
Fecha de publicación:2020
País:España
Institución:Instituto de Investigación Biomédica y Sanitaria de Alicante (ISABIAL)
Repositorio:r-ISABIAL. Repositorio Institucional de Producción Científica del Instituto de Investigación Biomédica y Sanitaria de Alicante
OAI Identifier:oai:isabial.fundanetsuite.com:p6661
Acceso en línea:https://isabial.portalinvestigacion.com/publicaciones6661
Access Level:acceso abierto
Palabra clave:Paediatric
Palliative care
End-of-life care
Survey
Questionnaire
Parental perspectives
Improvements
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spelling Efficacy of the Paediatrics Palliative Care Team of Murcia according to the experience of the parentsFornieles, MPBarbero, PGMMinarro, AMGBarbieri, GBellavia, NCortes, MDBMingorance, ANPaediatricPalliative careEnd-of-life careSurveyQuestionnaireParental perspectivesImprovementsIntroduction: The care at the end of children's lives must be sensitive to the needs of the child and their family. An understanding of the illness is required from the perspective of parents faced with the death of their child, in order to improve quality and guide the development of end-of-life care in Paediatrics. Method: A retrospective observational study was conducted between June 2014 and June 2017 using a questionnaire, to assess the needs, experiences, and satisfaction with the care received, from a sample of parents who lost a child due to a foreseeable cause. Three different study groups were formed based on the team responsible for end-of-life care, and an analysis was carried out on the differences between the group treated by the paediatric palliative care team, the group attended by non-palliative paediatricians, and the neonatal group. Results: Of the 80 eligible families, 64 could be contacted, and 28 (43.8%) finally completed the questionnaire. Our study shows positive experiences and high satisfaction of parents with the care received at the end of their child's life. The highest scores in experiences and satisfaction were given by the parents of the children served by the paediatric palliative care team, with statistically significant differences in family support, communication, shared decision making, and bereavement support (P < .05). Conclusions: Parents are satisfied with the care received at the end of their children's lives, but the intervention of a specific paediatric palliative care team improves the quality of care at the end of life in paediatrics. (c) 2019 Published by Elsevier Espana, S.L.U. on behalf of Asociacion Espaola de Pediatria. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).EDICIONES DOYMA S A2020info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionhttps://isabial.portalinvestigacion.com/publicaciones6661ANALES DE PEDIATRIAISSN: 16954033ISSNe: 16959531reponame:r-ISABIAL. Repositorio Institucional de Producción Científica del Instituto de Investigación Biomédica y Sanitaria de Alicanteinstname:Instituto de Investigación Biomédica y Sanitaria de Alicante (ISABIAL)Españolinfo:eu-repo/semantics/openAccessoai:isabial.fundanetsuite.com:p66612026-06-12T10:20:37Z
dc.title.none.fl_str_mv Efficacy of the Paediatrics Palliative Care Team of Murcia according to the experience of the parents
title Efficacy of the Paediatrics Palliative Care Team of Murcia according to the experience of the parents
spellingShingle Efficacy of the Paediatrics Palliative Care Team of Murcia according to the experience of the parents
Fornieles, MP
Paediatric
Palliative care
End-of-life care
Survey
Questionnaire
Parental perspectives
Improvements
title_short Efficacy of the Paediatrics Palliative Care Team of Murcia according to the experience of the parents
title_full Efficacy of the Paediatrics Palliative Care Team of Murcia according to the experience of the parents
title_fullStr Efficacy of the Paediatrics Palliative Care Team of Murcia according to the experience of the parents
title_full_unstemmed Efficacy of the Paediatrics Palliative Care Team of Murcia according to the experience of the parents
title_sort Efficacy of the Paediatrics Palliative Care Team of Murcia according to the experience of the parents
dc.creator.none.fl_str_mv Fornieles, MP
Barbero, PGM
Minarro, AMG
Barbieri, G
Bellavia, N
Cortes, MDB
Mingorance, AN
author Fornieles, MP
author_facet Fornieles, MP
Barbero, PGM
Minarro, AMG
Barbieri, G
Bellavia, N
Cortes, MDB
Mingorance, AN
author_role author
author2 Barbero, PGM
Minarro, AMG
Barbieri, G
Bellavia, N
Cortes, MDB
Mingorance, AN
author2_role author
author
author
author
author
author
dc.subject.none.fl_str_mv Paediatric
Palliative care
End-of-life care
Survey
Questionnaire
Parental perspectives
Improvements
topic Paediatric
Palliative care
End-of-life care
Survey
Questionnaire
Parental perspectives
Improvements
description Introduction: The care at the end of children's lives must be sensitive to the needs of the child and their family. An understanding of the illness is required from the perspective of parents faced with the death of their child, in order to improve quality and guide the development of end-of-life care in Paediatrics. Method: A retrospective observational study was conducted between June 2014 and June 2017 using a questionnaire, to assess the needs, experiences, and satisfaction with the care received, from a sample of parents who lost a child due to a foreseeable cause. Three different study groups were formed based on the team responsible for end-of-life care, and an analysis was carried out on the differences between the group treated by the paediatric palliative care team, the group attended by non-palliative paediatricians, and the neonatal group. Results: Of the 80 eligible families, 64 could be contacted, and 28 (43.8%) finally completed the questionnaire. Our study shows positive experiences and high satisfaction of parents with the care received at the end of their child's life. The highest scores in experiences and satisfaction were given by the parents of the children served by the paediatric palliative care team, with statistically significant differences in family support, communication, shared decision making, and bereavement support (P < .05). Conclusions: Parents are satisfied with the care received at the end of their children's lives, but the intervention of a specific paediatric palliative care team improves the quality of care at the end of life in paediatrics. (c) 2019 Published by Elsevier Espana, S.L.U. on behalf of Asociacion Espaola de Pediatria. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
publishDate 2020
dc.date.none.fl_str_mv 2020
dc.type.none.fl_str_mv info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
format article
status_str publishedVersion
dc.identifier.none.fl_str_mv https://isabial.portalinvestigacion.com/publicaciones6661
url https://isabial.portalinvestigacion.com/publicaciones6661
dc.language.none.fl_str_mv Español
language_invalid_str_mv Español
dc.rights.none.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.publisher.none.fl_str_mv EDICIONES DOYMA S A
publisher.none.fl_str_mv EDICIONES DOYMA S A
dc.source.none.fl_str_mv ANALES DE PEDIATRIA
ISSN: 16954033
ISSNe: 16959531
reponame:r-ISABIAL. Repositorio Institucional de Producción Científica del Instituto de Investigación Biomédica y Sanitaria de Alicante
instname:Instituto de Investigación Biomédica y Sanitaria de Alicante (ISABIAL)
instname_str Instituto de Investigación Biomédica y Sanitaria de Alicante (ISABIAL)
reponame_str r-ISABIAL. Repositorio Institucional de Producción Científica del Instituto de Investigación Biomédica y Sanitaria de Alicante
collection r-ISABIAL. Repositorio Institucional de Producción Científica del Instituto de Investigación Biomédica y Sanitaria de Alicante
repository.name.fl_str_mv
repository.mail.fl_str_mv
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