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Providing Home-Based Support for Children with Chronic Conditions in an Urban Slum: Experiences from a Community-Based Palliative Care Program in Bangladesh

We describe the palliative care needs of children with chronic conditions and their caregivers in an urban slum in Bangladesh. In this cross-sectional study, we interviewed 25 caregivers whose children receive support from a community-based program lead by community health workers, that provides med...

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Autores principales: Chowdhury, Mostofa Kamal, Shopna, Khadija, Lynch-Godrei, Anisha, Jain, Mehr, Farheen, Nadia, Begum, Noorjahan, Ahmad, Nezamuddin, Doherty, Megan
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7995301/
https://www.ncbi.nlm.nih.gov/pubmed/33816710
http://dx.doi.org/10.1177/2333794X21999155
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author Chowdhury, Mostofa Kamal
Shopna, Khadija
Lynch-Godrei, Anisha
Jain, Mehr
Farheen, Nadia
Begum, Noorjahan
Ahmad, Nezamuddin
Doherty, Megan
author_facet Chowdhury, Mostofa Kamal
Shopna, Khadija
Lynch-Godrei, Anisha
Jain, Mehr
Farheen, Nadia
Begum, Noorjahan
Ahmad, Nezamuddin
Doherty, Megan
author_sort Chowdhury, Mostofa Kamal
collection PubMed
description We describe the palliative care needs of children with chronic conditions and their caregivers in an urban slum in Bangladesh. In this cross-sectional study, we interviewed 25 caregivers whose children receive support from a community-based program lead by community health workers, that provides medication, medical supplies, food, caregiver training, and psychological support free of charge. The chronic conditions of children in the program included cerebral palsy (80%), congenital heart disease (8%), neurodegenerative conditions (4%), cancer (4%), and intellectual disabilities (4%). Common symptoms included cough or breathing problems (64%), fever (56%), and pain (56%). Most caregivers (96%) reported they were unable to do any paid work due to their child’s needs and in all families, the child’s condition had a significant impact on their financial situation. Community-based palliative care programs can be developed to support children with chronic conditions who may not access care from acute care facilities.
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spelling pubmed-79953012021-04-02 Providing Home-Based Support for Children with Chronic Conditions in an Urban Slum: Experiences from a Community-Based Palliative Care Program in Bangladesh Chowdhury, Mostofa Kamal Shopna, Khadija Lynch-Godrei, Anisha Jain, Mehr Farheen, Nadia Begum, Noorjahan Ahmad, Nezamuddin Doherty, Megan Glob Pediatr Health Original Article We describe the palliative care needs of children with chronic conditions and their caregivers in an urban slum in Bangladesh. In this cross-sectional study, we interviewed 25 caregivers whose children receive support from a community-based program lead by community health workers, that provides medication, medical supplies, food, caregiver training, and psychological support free of charge. The chronic conditions of children in the program included cerebral palsy (80%), congenital heart disease (8%), neurodegenerative conditions (4%), cancer (4%), and intellectual disabilities (4%). Common symptoms included cough or breathing problems (64%), fever (56%), and pain (56%). Most caregivers (96%) reported they were unable to do any paid work due to their child’s needs and in all families, the child’s condition had a significant impact on their financial situation. Community-based palliative care programs can be developed to support children with chronic conditions who may not access care from acute care facilities. SAGE Publications 2021-03-24 /pmc/articles/PMC7995301/ /pubmed/33816710 http://dx.doi.org/10.1177/2333794X21999155 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by-nc/4.0/ This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Original Article
Chowdhury, Mostofa Kamal
Shopna, Khadija
Lynch-Godrei, Anisha
Jain, Mehr
Farheen, Nadia
Begum, Noorjahan
Ahmad, Nezamuddin
Doherty, Megan
Providing Home-Based Support for Children with Chronic Conditions in an Urban Slum: Experiences from a Community-Based Palliative Care Program in Bangladesh
title Providing Home-Based Support for Children with Chronic Conditions in an Urban Slum: Experiences from a Community-Based Palliative Care Program in Bangladesh
title_full Providing Home-Based Support for Children with Chronic Conditions in an Urban Slum: Experiences from a Community-Based Palliative Care Program in Bangladesh
title_fullStr Providing Home-Based Support for Children with Chronic Conditions in an Urban Slum: Experiences from a Community-Based Palliative Care Program in Bangladesh
title_full_unstemmed Providing Home-Based Support for Children with Chronic Conditions in an Urban Slum: Experiences from a Community-Based Palliative Care Program in Bangladesh
title_short Providing Home-Based Support for Children with Chronic Conditions in an Urban Slum: Experiences from a Community-Based Palliative Care Program in Bangladesh
title_sort providing home-based support for children with chronic conditions in an urban slum: experiences from a community-based palliative care program in bangladesh
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7995301/
https://www.ncbi.nlm.nih.gov/pubmed/33816710
http://dx.doi.org/10.1177/2333794X21999155
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