Lived Experience of Mothers with Duchenne Muscular Dystrophy Children, Kathmandu

Abstract

Introduction: Duchenne Muscular Dystrophy (DMD) is a genetic neuromuscular disorder with functional disability. In Nepal, eight hundred cases have been registered in Muscular Dystrophy Foundation (MDF). The Survival age of child with Duchene Muscular Dystrophy (DMD) is not more than twenty four years of life. (MDF-Nepal). The purpose of this study was to explore the lived experiences of mothers who are taking care of children with muscular dystrophy.

Methods: Using a phenomenological design, nine mothers having DMD children were selected. Data was gathered using In-depth interview method. Respondent’s verbal as well as nonverbal clues were recorded during observation. Two to three in-depth interviews were carried out with each respondent along with audio tape recording and field notes.

Results: Almost all of the respondents perceived DMD as a progressive fatal form of neuromuscular disease making the child unable to walk by 7-8 years of age. Majority of the respondents had suffered from psychosocial problems as well. The initial reaction of mothers regarding children’s diagnosis was a feeling of mixed emotion. Majority of the mothers relieved their anxiety to some extent by sharing their feelings with others, assuring themselves and accepting their reality of their child’s illness. Clusters of themes were identified: perception regarding disease, treatment modality, physical mobility of child, and coping mechanisms.

Conclusion: Mothers of DMD children are facing a huge array of problems which has decreases the quality of life of mothers. It is recommended to provide, social security, free supply of medicine, health facility and Palliative care for DMD child so that parents may face fewer problems.