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

ABSTRACT

PURPOSE: 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. METHODS: 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. RESULTS: 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 struggle to belong, a yearning for normalcy in social spaces. Major identified themes were challenges with schooling, disabling society, feeling of being alone, and feeling of being a burden to the family. CONCLUSION: 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.

This is an addition to the existing body of literature from the Indian context and points toward the need for creating awareness about social inclusion in the healthcare professionals, general public and in schools.Strengthening the social support system with referrals to and liaising with other relevant internal and external services and resources, home support services is important.This can prepare the children with Duchenne muscular dystrophy with adequate information about social connections and prepare them emotionally.Mainstreaming of children with the necessary support of various stakeholders in the society will go a long way to ensure quality of life of the children.