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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...
Autores principales: | , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
SAGE Publications
2021
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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. |
format | Online Article Text |
id | pubmed-7995301 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | SAGE Publications |
record_format | MEDLINE/PubMed |
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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