Investigating the Living Experience of Boys with Muscular Dystrophic Disease in Kermanshah

Muscular dystrophy is a common genetic condition that causes progressive loss of physical function. This study seeks to explore the lived experiences of boys with muscular dystrophy in Kermanshah.

The research methodology used in this study is phenomenological. The sample size consists of ten boys diagnosed with muscular dystrophy in Kermanshah. The sampling method was purposive, and data was collected through in-depth interviews.

Based on the data analysis, there are two main themes that emerged. The first theme is the Continuation of External Quality, with sub-themes including Broken Individual Communication, Corrupted Identity, Endless Everyday Life, Social Isolation, and Bio-fragility. The second theme is Feelings and Concerns, with sub-themes such as Feeling Anxiety, False Hope, No Surrender, and Shame and Fear of Losing Parents.

The study reveals that individuals with muscular dystrophy face unfavorable social and individual status. Therfore, it is important to enhance public spaces and urban transportation, ensure the implementation of laws that facilitate their employment, introduce social and cultural policies to change people's attitudes towards them, plan their capabilities through national media, review existing laws, and provide support packages to improve their situation. Additionally, the participation of NGOs should be facilitated to help reduce harm.