Indian Journal of Palliative Care
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 ORIGINAL ARTICLE
Year : 2021  |  Volume : 27  |  Issue : 1  |  Page : 146--151

Palliative care in duchenne muscular dystrophy: A study on parents' understanding


1 Department of Psychiatric Social Work, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India
2 Department of Psychology, Christ University, Bengaluru, Karnataka, India
3 Postdoctoral Fellow, Children's Hospital of Eastern Ontario Research Institute, Ottwa, Canada
4 Department of Neurology, TRUSTWELL Hospitals, Bengaluru, Karnataka, India
5 Department of Neurology, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India
6 Department of Child and Adolescent Psychiatry, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India
7 Department of Clinical Psychology, National Institute of Mental Health and Neuro Sciences, Bengaluru, Karnataka, India

Correspondence Address:
Priya Treesa Thomas
Department of Psychiatric Social Work, National Institute of Mental Health and Neuro Sciences, Bengaluru - 560 029, Karnataka
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/IJPC.IJPC_259_20

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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.






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