The struggle to belong: a qualitative exploration of challenges in social spaces faced by children with Duchenne muscular dystrophy attending neuromuscular disorders clinic.

Abstract

Duchenne muscular dystrophy (DMD), a genetically linked muscle disease, is one of the most devastating diseases with currently no cure. Developing essential social skills as a child moves into adolescence is particularly problematic in DMD. The present study is an exploration of the social challenges faced by children with DMD. A qualitative study was conducted among ten children diagnosed with DMD receiving treatment in a neuromuscular disorder clinic of a tertiary referral care center in Southern India. Participants were recruited purposively and were interviewed face-to-face and through telephone. The recorded interviews were transcribed and analyzed using reflexive thematic analysis. Mean age of the children was 13.9 (range: 13-15) at the time of the interviews, and six children had stopped schooling. The overarching theme generated from the interviews was <i>struggle to belong,</i> a yearning for normalcy in social spaces. Major identified themes were <i>challenges with schooling, disabling society, feeling of being alone</i>, and <i>feeling of being a burden to the family.</i> The study highlighted the struggles of children that become a complex social problem for them. Efforts need to be made to be child-centric and encourage inclusion by improving accessibility and social support through sensitization programs.