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Rarecare: A policy perspective on the burden of rare diseases on caregivers in Latin America

In Latin America (LA), 40–50 million people live with rare diseases (RDs) that require constant monitoring, care, and attention. Caregivers help them with their basic life activities and medication administration, which they would otherwise be unable to perform. Family caregivers complement healthca...

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Autores principales: Dias, Ariadne Guimarães, Daher, Antoine, Barrera Ortiz, Lucy, Carreño-Moreno, Sonia, Hafez H, Sylvia R., Jansen, Angela Marie, Rico-Restrepo, Mariana, Chaparro-Diaz, Lorena
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10017724/
https://www.ncbi.nlm.nih.gov/pubmed/36935700
http://dx.doi.org/10.3389/fpubh.2023.1127713
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author Dias, Ariadne Guimarães
Daher, Antoine
Barrera Ortiz, Lucy
Carreño-Moreno, Sonia
Hafez H, Sylvia R.
Jansen, Angela Marie
Rico-Restrepo, Mariana
Chaparro-Diaz, Lorena
author_facet Dias, Ariadne Guimarães
Daher, Antoine
Barrera Ortiz, Lucy
Carreño-Moreno, Sonia
Hafez H, Sylvia R.
Jansen, Angela Marie
Rico-Restrepo, Mariana
Chaparro-Diaz, Lorena
author_sort Dias, Ariadne Guimarães
collection PubMed
description In Latin America (LA), 40–50 million people live with rare diseases (RDs) that require constant monitoring, care, and attention. Caregivers help them with their basic life activities and medication administration, which they would otherwise be unable to perform. Family caregivers complement healthcare and social security systems; however, their unpaid work is often underappreciated and under-protected. Recognizing the need to address these unrecognized and undervalued women, the Americas Health Foundation (AHF) convened a panel of LA experts on caregiving for people with RDs to provide recommendations to support the undervalued family caregivers. A panel of LA experts in caregiving for RDs were given questions to address the challenges faced by family caregivers of people with RDs in LA. During a 3-day conference, the panelists' responses were discussed and edited until the panel agreed on recommendations to address the challenges. The identified challenges for caregivers included physical, emotional, and economical areas. Caregivers, primarily women, experienced physical pain, and social isolation, and were forced to pay substantial out-of-pocket expenses in their caregiving roles. Brazil and Colombia are at the forefront of policies to protect caregivers and their experiences in attempting to provide for this group are outlined as case studies for what is possible in LA. Finally, recognizing that caregivers must be included in formulating, executing, and evaluating care policies for people living with RDs and that the caregivers themselves require social assurances, the panel suggested policy objectives aimed at protecting caregivers of people living with RDs. The recommendations ranged from recognizing the role of the family caregiver as an essential supplement to the formal healthcare system to providing financial assistance, training, and workplace protection, among others. Finally, monitoring and evaluating the impact of policies is necessary to ensure that LA is moving forward in caring for family caregivers for people with RDs.
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spelling pubmed-100177242023-03-17 Rarecare: A policy perspective on the burden of rare diseases on caregivers in Latin America Dias, Ariadne Guimarães Daher, Antoine Barrera Ortiz, Lucy Carreño-Moreno, Sonia Hafez H, Sylvia R. Jansen, Angela Marie Rico-Restrepo, Mariana Chaparro-Diaz, Lorena Front Public Health Public Health In Latin America (LA), 40–50 million people live with rare diseases (RDs) that require constant monitoring, care, and attention. Caregivers help them with their basic life activities and medication administration, which they would otherwise be unable to perform. Family caregivers complement healthcare and social security systems; however, their unpaid work is often underappreciated and under-protected. Recognizing the need to address these unrecognized and undervalued women, the Americas Health Foundation (AHF) convened a panel of LA experts on caregiving for people with RDs to provide recommendations to support the undervalued family caregivers. A panel of LA experts in caregiving for RDs were given questions to address the challenges faced by family caregivers of people with RDs in LA. During a 3-day conference, the panelists' responses were discussed and edited until the panel agreed on recommendations to address the challenges. The identified challenges for caregivers included physical, emotional, and economical areas. Caregivers, primarily women, experienced physical pain, and social isolation, and were forced to pay substantial out-of-pocket expenses in their caregiving roles. Brazil and Colombia are at the forefront of policies to protect caregivers and their experiences in attempting to provide for this group are outlined as case studies for what is possible in LA. Finally, recognizing that caregivers must be included in formulating, executing, and evaluating care policies for people living with RDs and that the caregivers themselves require social assurances, the panel suggested policy objectives aimed at protecting caregivers of people living with RDs. The recommendations ranged from recognizing the role of the family caregiver as an essential supplement to the formal healthcare system to providing financial assistance, training, and workplace protection, among others. Finally, monitoring and evaluating the impact of policies is necessary to ensure that LA is moving forward in caring for family caregivers for people with RDs. Frontiers Media S.A. 2023-03-02 /pmc/articles/PMC10017724/ /pubmed/36935700 http://dx.doi.org/10.3389/fpubh.2023.1127713 Text en Copyright © 2023 Dias, Daher, Barrera Ortiz, Carreño-Moreno, Hafez H, Jansen, Rico-Restrepo and Chaparro-Diaz. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Public Health
Dias, Ariadne Guimarães
Daher, Antoine
Barrera Ortiz, Lucy
Carreño-Moreno, Sonia
Hafez H, Sylvia R.
Jansen, Angela Marie
Rico-Restrepo, Mariana
Chaparro-Diaz, Lorena
Rarecare: A policy perspective on the burden of rare diseases on caregivers in Latin America
title Rarecare: A policy perspective on the burden of rare diseases on caregivers in Latin America
title_full Rarecare: A policy perspective on the burden of rare diseases on caregivers in Latin America
title_fullStr Rarecare: A policy perspective on the burden of rare diseases on caregivers in Latin America
title_full_unstemmed Rarecare: A policy perspective on the burden of rare diseases on caregivers in Latin America
title_short Rarecare: A policy perspective on the burden of rare diseases on caregivers in Latin America
title_sort rarecare: a policy perspective on the burden of rare diseases on caregivers in latin america
topic Public Health
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10017724/
https://www.ncbi.nlm.nih.gov/pubmed/36935700
http://dx.doi.org/10.3389/fpubh.2023.1127713
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