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How do caregivers of children with congenital heart diseases access and navigate the healthcare system in Ethiopia?

BACKGROUND: Surgery can correct congenital heart defects, but disease management in low- and middle-income countries can be challenging and complex due to a lack of referral system, financial resources, human resources, and infrastructure for surgical and post-operative care. This study investigates...

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Autores principales: Choi, Sugy, Shin, Heesu, Heo, Jongho, Gedlu, Etsegenet, Nega, Berhanu, Moges, Tamirat, Bezabih, Abebe, Park, Jayoung, Kim, Woong-Han
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7852139/
https://www.ncbi.nlm.nih.gov/pubmed/33526022
http://dx.doi.org/10.1186/s12913-021-06083-2
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author Choi, Sugy
Shin, Heesu
Heo, Jongho
Gedlu, Etsegenet
Nega, Berhanu
Moges, Tamirat
Bezabih, Abebe
Park, Jayoung
Kim, Woong-Han
author_facet Choi, Sugy
Shin, Heesu
Heo, Jongho
Gedlu, Etsegenet
Nega, Berhanu
Moges, Tamirat
Bezabih, Abebe
Park, Jayoung
Kim, Woong-Han
author_sort Choi, Sugy
collection PubMed
description BACKGROUND: Surgery can correct congenital heart defects, but disease management in low- and middle-income countries can be challenging and complex due to a lack of referral system, financial resources, human resources, and infrastructure for surgical and post-operative care. This study investigates the experiences of caregivers of children with CHD accessing the health care system and pediatric cardiac surgery. METHODS: A qualitative study was conducted at a teaching hospital in Ethiopia. We conducted semi-structured interviews with 13 caregivers of 10 patients with CHD who underwent cardiac surgery. We additionally conducted chart reviews for triangulation and verification. Interviews were conducted in Amharic and then translated into English. Data were analyzed according to the principles of interpretive thematic analysis, informed by the candidacy framework. RESULTS: The following four observations emerged from the interviews: (a) most patients were diagnosed with CHD at birth if they were born at a health care facility, but for those born at home, CHD was discovered much later (b) many patients experienced misdiagnoses before seeking care at a large hospital, (c) after diagnosis, patients were waiting for the surgery for more than a year, (d) caregivers felt anxious and optimistic once they were able to schedule the surgical date. During the care-seeking journey, caregivers encountered financial constraints, struggled in a fragmented delivery system, and experienced poor service quality. CONCLUSIONS: Delayed access to care was largely due to the lack of early CHD recognition and financial hardships, related to the inefficient and disorganized health care system. Fee waivers were available to assist low-income children in gaining access to health services or medications, but application information was not readily available. Indirect costs like long-distance travel contributed to this challenge. Overall, improvements must be made for district-level screening and the health care workforce. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12913-021-06083-2.
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spelling pubmed-78521392021-02-03 How do caregivers of children with congenital heart diseases access and navigate the healthcare system in Ethiopia? Choi, Sugy Shin, Heesu Heo, Jongho Gedlu, Etsegenet Nega, Berhanu Moges, Tamirat Bezabih, Abebe Park, Jayoung Kim, Woong-Han BMC Health Serv Res Research Article BACKGROUND: Surgery can correct congenital heart defects, but disease management in low- and middle-income countries can be challenging and complex due to a lack of referral system, financial resources, human resources, and infrastructure for surgical and post-operative care. This study investigates the experiences of caregivers of children with CHD accessing the health care system and pediatric cardiac surgery. METHODS: A qualitative study was conducted at a teaching hospital in Ethiopia. We conducted semi-structured interviews with 13 caregivers of 10 patients with CHD who underwent cardiac surgery. We additionally conducted chart reviews for triangulation and verification. Interviews were conducted in Amharic and then translated into English. Data were analyzed according to the principles of interpretive thematic analysis, informed by the candidacy framework. RESULTS: The following four observations emerged from the interviews: (a) most patients were diagnosed with CHD at birth if they were born at a health care facility, but for those born at home, CHD was discovered much later (b) many patients experienced misdiagnoses before seeking care at a large hospital, (c) after diagnosis, patients were waiting for the surgery for more than a year, (d) caregivers felt anxious and optimistic once they were able to schedule the surgical date. During the care-seeking journey, caregivers encountered financial constraints, struggled in a fragmented delivery system, and experienced poor service quality. CONCLUSIONS: Delayed access to care was largely due to the lack of early CHD recognition and financial hardships, related to the inefficient and disorganized health care system. Fee waivers were available to assist low-income children in gaining access to health services or medications, but application information was not readily available. Indirect costs like long-distance travel contributed to this challenge. Overall, improvements must be made for district-level screening and the health care workforce. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12913-021-06083-2. BioMed Central 2021-02-01 /pmc/articles/PMC7852139/ /pubmed/33526022 http://dx.doi.org/10.1186/s12913-021-06083-2 Text en © The Author(s) 2021 Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research Article
Choi, Sugy
Shin, Heesu
Heo, Jongho
Gedlu, Etsegenet
Nega, Berhanu
Moges, Tamirat
Bezabih, Abebe
Park, Jayoung
Kim, Woong-Han
How do caregivers of children with congenital heart diseases access and navigate the healthcare system in Ethiopia?
title How do caregivers of children with congenital heart diseases access and navigate the healthcare system in Ethiopia?
title_full How do caregivers of children with congenital heart diseases access and navigate the healthcare system in Ethiopia?
title_fullStr How do caregivers of children with congenital heart diseases access and navigate the healthcare system in Ethiopia?
title_full_unstemmed How do caregivers of children with congenital heart diseases access and navigate the healthcare system in Ethiopia?
title_short How do caregivers of children with congenital heart diseases access and navigate the healthcare system in Ethiopia?
title_sort how do caregivers of children with congenital heart diseases access and navigate the healthcare system in ethiopia?
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7852139/
https://www.ncbi.nlm.nih.gov/pubmed/33526022
http://dx.doi.org/10.1186/s12913-021-06083-2
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