Impact of disability on family: a case study on muscular dystrophy

Abstract

Muscular Dystrophy refers to a group of disorders of progressive muscular degeneration and weakness. It leads to loss of strength of the skeletal muscles that control movement. The impact of muscular dystrophy is not only limited to physical disability, but it also impairs cognitive functions. Aim: The current study aims to understand the impact of children with muscular dystrophy on family. The specific areas explored in the study include struggles in providing physical care, financial burden, caregiver’s health, career adjustments, psychological burden and limitations in social activities. Method: The study focused on the family of two boys with muscular dystrophy. A semi-structured interview schedule was used to gather data about how a family coped with muscular dystrophy in two children. Results: The findings of the study showed that physical disability and the consequent cognitive impairment has a significant negative impact on family. Conclusion: The impact of disability on family due to muscular dystrophy is significant. The primary concerns in terms of impact is found to be on caregiver’s health, financial and psychological burden.