Schooling of Children with Duchenne Muscular Dystrophy: Experiences from a Tertiary Care Center in India

Schooling of Children with Duchenne Muscular Dystrophy: Experiences from a Tertiary Care Center in India

Duchenne muscular dystrophy (DMD), a progressive genetic neuromuscular disease, affects all major muscle groups in the body. Academic functioning is affected by the progressive nature of DMD and physical fatigue. To explore the experiential account of schooling and the barriers in schooling among ch...

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Bibliographic Details
Published in:School social work journal Vol. 45; no. 2; pp. 21 - 33
Main Authors: Sadasivan, Arun, Warrier, Manjusha G, Kishore, M. Thomas, Sagar, K. John Vijaya, Vengalil, Seena, Polavarapu, Kiran, Preethish-Kumar, Veeramani, Nair, Meera G, Keerthipriya, M. S, Nalini, Atchayaram, Thomas, Priya Treesa
Format: Journal Article
Language:English
Published: David Follmer Group 01-06-2021
Subjects:
Access to Education
Accessibility (for Disabled)
Adolescents
Barriers
Bullying
Children
Classroom Environment
Educational Facilities
Emotional Response
Foreign Countries
Genetic Disorders
Inclusion
Institutional Characteristics
Males
Neurological Impairments
Peer Relationship
Physical Disabilities
Student Experience
Student Transportation
Students with Disabilities
India
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Summary:Duchenne muscular dystrophy (DMD), a progressive genetic neuromuscular disease, affects all major muscle groups in the body. Academic functioning is affected by the progressive nature of DMD and physical fatigue. To explore the experiential account of schooling and the barriers in schooling among children with DMD in India and to develop recommendations for school accommodation, a descriptive cross-sectional study was conducted with thirty-three male children who were diagnosed with DMD and receiving treatment from a tertiary center. A sociodemographic data sheet and a semi-structured questionnaire were used for data collection. The data were subjected to descriptive statistical and thematic analysis to derive the results. Eighty percent of the children received support from teachers and friends, and 28 percent reported their school as disability friendly. Themes derived from qualitative thematic analysis were physical difficulties, environmental barriers, and emotional difficulties. Based on the study results and review of the existing literature, recommendations for school accommodation will be proposed. Despite the difficulties they face in the school setting, active participation in school is important for children with progressive conditions such as DMD. Families and schools have a responsibility to ensure that children have an inclusive life, the barriers they face are minimized, and their time at school enhances their range of experiences and quality of life.
ISSN:0161-5653