Palliative Care in Duchenne Muscular Dystrophy: A Study on Parents' Understanding

Title

Palliative Care in Duchenne Muscular Dystrophy: A Study on Parents' Understanding

Creator

Sadasivan A; Warrier MG; Polavarapu K; Preethish-Kumar V; Nair MG; Keerthipriya MS; Vengalil S; Sagar JV; Kishore T; Nalini A; Thomas PT

Publisher

Indian Journal of Palliative Care

Date

2021

Subject

Children with duchenne muscular dystrophy; paediatric palliative care; parent understanding; parents

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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

July 2021 List

Collection

Citation

Sadasivan A; Warrier MG; Polavarapu K; Preethish-Kumar V; Nair MG; Keerthipriya MS; Vengalil S; Sagar JV; Kishore T; Nalini A; Thomas PT, “Palliative Care in Duchenne Muscular Dystrophy: A Study on Parents' Understanding,” Pediatric Palliative Care Library, accessed February 7, 2023, https://pedpalascnetlibrary.omeka.net/items/show/17605.

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