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Palliative Care in Duchenne Muscular Dystrophy: A Study on Parents' Understanding
INTRODUCTION: Duchene muscular dystrophy (DMD) is a neuromuscular disease of childhood, which has clear progression. The international standardized care guidelines for DMD suggest that palliative care is essential for the affected children. OBJECTIVE: To explore the parent's understanding of pa...
Autores principales: | , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Wolters Kluwer - Medknow
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8121239/ https://www.ncbi.nlm.nih.gov/pubmed/34035633 http://dx.doi.org/10.4103/IJPC.IJPC_259_20 |
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author | Sadasivan, Arun Warrier, Manjusha G Polavarapu, Kiran Preethish-Kumar, Veeramani Nair, Meera G Keerthipriya, MS Vengalil, Seena Sagar, John Vijay Kishore, Thomas Nalini, Atchayaram Thomas, Priya Treesa |
author_facet | Sadasivan, Arun Warrier, Manjusha G Polavarapu, Kiran Preethish-Kumar, Veeramani Nair, Meera G Keerthipriya, MS Vengalil, Seena Sagar, John Vijay Kishore, Thomas Nalini, Atchayaram Thomas, Priya Treesa |
author_sort | Sadasivan, Arun |
collection | PubMed |
description | INTRODUCTION: Duchene muscular dystrophy (DMD) is a neuromuscular disease of childhood, which has clear progression. The international standardized care guidelines for DMD suggest that palliative care is essential for the affected children. OBJECTIVE: To explore the parent's understanding of palliative care services available for children with DMD and the challenges faced by them in utilizing the same. METHODS: A cross-sectional qualitative exploratory study was conducted among six families of boys diagnosed with DMD. A semi-structured interview guide with prompts was used to conduct in-depth interviews which lasted for an average of 1 h. Thematic analysis was done to identify the pattern or themes. RESULTS: The major themes identified were “palliative care, living with DMD, Awareness about palliative care services and challenges.” Awareness about palliative care services is the dominant theme identified as influencing rest of the experiences narrated by the parents of children with DMD. DISCUSSION: Integration of palliative care services from an early stage of the illness can help the child to make transition from one stage to another stage of the illness. To ensure the utilization of the available palliative care services, there is a need to create awareness about it among the general public. CONCLUSION: Introducing the concept of palliation of symptoms and ensuring quality of life of the child with DMD by accessing the available services can aid the parents to reach out for help for their child. |
format | Online Article Text |
id | pubmed-8121239 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | Wolters Kluwer - Medknow |
record_format | MEDLINE/PubMed |
spelling | pubmed-81212392021-05-24 Palliative Care in Duchenne Muscular Dystrophy: A Study on Parents' Understanding Sadasivan, Arun Warrier, Manjusha G Polavarapu, Kiran Preethish-Kumar, Veeramani Nair, Meera G Keerthipriya, MS Vengalil, Seena Sagar, John Vijay Kishore, Thomas Nalini, Atchayaram Thomas, Priya Treesa Indian J Palliat Care Original Article INTRODUCTION: Duchene muscular dystrophy (DMD) is a neuromuscular disease of childhood, which has clear progression. The international standardized care guidelines for DMD suggest that palliative care is essential for the affected children. OBJECTIVE: To explore the parent's understanding of palliative care services available for children with DMD and the challenges faced by them in utilizing the same. METHODS: A cross-sectional qualitative exploratory study was conducted among six families of boys diagnosed with DMD. A semi-structured interview guide with prompts was used to conduct in-depth interviews which lasted for an average of 1 h. Thematic analysis was done to identify the pattern or themes. RESULTS: The major themes identified were “palliative care, living with DMD, Awareness about palliative care services and challenges.” Awareness about palliative care services is the dominant theme identified as influencing rest of the experiences narrated by the parents of children with DMD. DISCUSSION: Integration of palliative care services from an early stage of the illness can help the child to make transition from one stage to another stage of the illness. To ensure the utilization of the available palliative care services, there is a need to create awareness about it among the general public. CONCLUSION: Introducing the concept of palliation of symptoms and ensuring quality of life of the child with DMD by accessing the available services can aid the parents to reach out for help for their child. Wolters Kluwer - Medknow 2021 2021-02-17 /pmc/articles/PMC8121239/ /pubmed/34035633 http://dx.doi.org/10.4103/IJPC.IJPC_259_20 Text en Copyright: © 2021 Indian Journal of Palliative Care https://creativecommons.org/licenses/by-nc-sa/4.0/This is an open access journal, and articles are distributed under the terms of the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 License, which allows others to remix, tweak, and build upon the work non-commercially, as long as appropriate credit is given and the new creations are licensed under the identical terms. |
spellingShingle | Original Article Sadasivan, Arun Warrier, Manjusha G Polavarapu, Kiran Preethish-Kumar, Veeramani Nair, Meera G Keerthipriya, MS Vengalil, Seena Sagar, John Vijay Kishore, Thomas Nalini, Atchayaram Thomas, Priya Treesa Palliative Care in Duchenne Muscular Dystrophy: A Study on Parents' Understanding |
title | Palliative Care in Duchenne Muscular Dystrophy: A Study on Parents' Understanding |
title_full | Palliative Care in Duchenne Muscular Dystrophy: A Study on Parents' Understanding |
title_fullStr | Palliative Care in Duchenne Muscular Dystrophy: A Study on Parents' Understanding |
title_full_unstemmed | Palliative Care in Duchenne Muscular Dystrophy: A Study on Parents' Understanding |
title_short | Palliative Care in Duchenne Muscular Dystrophy: A Study on Parents' Understanding |
title_sort | palliative care in duchenne muscular dystrophy: a study on parents' understanding |
topic | Original Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8121239/ https://www.ncbi.nlm.nih.gov/pubmed/34035633 http://dx.doi.org/10.4103/IJPC.IJPC_259_20 |
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