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Health literacy on quality of life for children with cancer: modules on pediatric palliative care

OBJECTIVE. To describe the development of educational materials for parents and other caregivers of children with cancer, which utilized a culturally sensitive approach to reduce acceptance barriers to palliative care (PC). METHODS. The Pan American Health Organization (PAHO), St. Jude Children’s Re...

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Autores principales: García-Quintero, Ximena, Bastardo Blanco, Daniel, Vásquez, Liliana, Fuentes-Alabí, Soad, Benites-Majano, Sara, Maza, Mauricio, Ugaz, Cecilia, Morales, Roxana, Baker, Justin N, McNeil, Michael J.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Organización Panamericana de la Salud 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10516324/
https://www.ncbi.nlm.nih.gov/pubmed/37750058
http://dx.doi.org/10.26633/RPSP.2023.134
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author García-Quintero, Ximena
Bastardo Blanco, Daniel
Vásquez, Liliana
Fuentes-Alabí, Soad
Benites-Majano, Sara
Maza, Mauricio
Ugaz, Cecilia
Morales, Roxana
Baker, Justin N
McNeil, Michael J.
author_facet García-Quintero, Ximena
Bastardo Blanco, Daniel
Vásquez, Liliana
Fuentes-Alabí, Soad
Benites-Majano, Sara
Maza, Mauricio
Ugaz, Cecilia
Morales, Roxana
Baker, Justin N
McNeil, Michael J.
author_sort García-Quintero, Ximena
collection PubMed
description OBJECTIVE. To describe the development of educational materials for parents and other caregivers of children with cancer, which utilized a culturally sensitive approach to reduce acceptance barriers to palliative care (PC). METHODS. The Pan American Health Organization (PAHO), St. Jude Children’s Research Hospital, and partners in Latin America and the Caribbean collaborated in a three-phase project, beginning with a needs assessment survey of caregivers of children with cancer in Peru. Based on this finding, an interdisciplinary team of pediatric PC experts developed educational content that was designed and validated by an international committee of PC and communication experts. RESULTS. The collaboration resulted in the development of an eight-module series that introduces caregivers to key concepts of pediatric PC, including management of pain, quality of life, and end of life care. The series was designed to reduce caregiver stigma associated with PC through culturally sensitive education that addresses the low levels of health literacy among caregivers in Latin America and the Caribbean. In the 15 months since the launch, these modules have been distributed throughout Latin America and were downloaded 2 825 times. CONCLUSIONS. Educational materials and anticipatory guidance of PC were considered to be a priority for parents and other caregivers of children with cancer throughout Latin America. The materials developed through this project have been widely utilized and are available through the PAHO website and the Together by St. Jude™ online resource.
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spelling pubmed-105163242023-09-25 Health literacy on quality of life for children with cancer: modules on pediatric palliative care García-Quintero, Ximena Bastardo Blanco, Daniel Vásquez, Liliana Fuentes-Alabí, Soad Benites-Majano, Sara Maza, Mauricio Ugaz, Cecilia Morales, Roxana Baker, Justin N McNeil, Michael J. Rev Panam Salud Publica Brief Communication OBJECTIVE. To describe the development of educational materials for parents and other caregivers of children with cancer, which utilized a culturally sensitive approach to reduce acceptance barriers to palliative care (PC). METHODS. The Pan American Health Organization (PAHO), St. Jude Children’s Research Hospital, and partners in Latin America and the Caribbean collaborated in a three-phase project, beginning with a needs assessment survey of caregivers of children with cancer in Peru. Based on this finding, an interdisciplinary team of pediatric PC experts developed educational content that was designed and validated by an international committee of PC and communication experts. RESULTS. The collaboration resulted in the development of an eight-module series that introduces caregivers to key concepts of pediatric PC, including management of pain, quality of life, and end of life care. The series was designed to reduce caregiver stigma associated with PC through culturally sensitive education that addresses the low levels of health literacy among caregivers in Latin America and the Caribbean. In the 15 months since the launch, these modules have been distributed throughout Latin America and were downloaded 2 825 times. CONCLUSIONS. Educational materials and anticipatory guidance of PC were considered to be a priority for parents and other caregivers of children with cancer throughout Latin America. The materials developed through this project have been widely utilized and are available through the PAHO website and the Together by St. Jude™ online resource. Organización Panamericana de la Salud 2023-09-25 /pmc/articles/PMC10516324/ /pubmed/37750058 http://dx.doi.org/10.26633/RPSP.2023.134 Text en https://creativecommons.org/licenses/by-nc-nd/3.0/us/This is an open access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs 3.0 IGO License, which permits use, distribution, and reproduction in any medium, provided the original work is properly cited. No modifications or commercial use of this article are permitted. In any reproduction of this article there should not be any suggestion that PAHO or this article endorse any specific organization or products. The use of the PAHO logo is not permitted. This notice should be preserved along with the article’s original URL. Open access logo and text by PLoS, under the Creative Commons Attribution-Share Alike 3.0 Unported license.
spellingShingle Brief Communication
García-Quintero, Ximena
Bastardo Blanco, Daniel
Vásquez, Liliana
Fuentes-Alabí, Soad
Benites-Majano, Sara
Maza, Mauricio
Ugaz, Cecilia
Morales, Roxana
Baker, Justin N
McNeil, Michael J.
Health literacy on quality of life for children with cancer: modules on pediatric palliative care
title Health literacy on quality of life for children with cancer: modules on pediatric palliative care
title_full Health literacy on quality of life for children with cancer: modules on pediatric palliative care
title_fullStr Health literacy on quality of life for children with cancer: modules on pediatric palliative care
title_full_unstemmed Health literacy on quality of life for children with cancer: modules on pediatric palliative care
title_short Health literacy on quality of life for children with cancer: modules on pediatric palliative care
title_sort health literacy on quality of life for children with cancer: modules on pediatric palliative care
topic Brief Communication
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10516324/
https://www.ncbi.nlm.nih.gov/pubmed/37750058
http://dx.doi.org/10.26633/RPSP.2023.134
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