Unseen Struggles of Individuals with Muscular Dystrophy: An Ethnographic Study of EHSAS Welfare Trust, Rawalpindi

Abstract

Muscular Dystrophy has many aspects that are physically, emotionally, and socially challenging for a patient and their caregivers in case of severe forms of the disease. Still, unfortunately, these aspects are not well documented. The present research aims to identify the problems of Muscular Dystrophy patients and their caregivers in the context of EHSAS Welfare Trust based in Rawalpindi, Pakistan. The objective of this ethnography are to describe the patients’ and caregivers’ experiences, identify the gaps in existing support systems, and analyzing the role of family involvement on patient’s adjustment. Using qualitative methods, including participant observation and in-depth interviews, the research demonstrates that family networks are helpful to patients and contribute to creation of considerable practical and emotional stress on the caregivers. The findings highlight the necessity of culturally appropriate interventions to help Muscular Dystrophy patients and their caregivers. Ultimately, the study concludes that greater access to medical care, better rehabilitation, and, most importantly, extended community outreach programs and publicity are essential to ease the burden of Muscular Dystrophy patients and improve the quality of life for those affected. The findings of this study may help the policy makers to coordinate with trained professionals and advanced rehabilitation services to provide comprehensive care for muscular dystrophy patients.