Bullying is an epidemic in Canada, and rates may be underreported. Youth with a disability were more likely to be bullied that those without disabilities, specifically if the disability was visible. Research has been conducted on the prevalence and effects of bullying in youth with disabilities such as cerebral palsy, obesity, and chronic pain; however, there is a paucity of research involving youth with muscular dystrophy and congenital myopathies. The objectives of this study are to: (1) measure bullying frequency, (2) describe the types of bullying experiences; and (3) explore barriers and facilitators to dealing with bullying by youth with muscular dystrophy or congenital myopathies and their parents. The objectives will be met by an online survey and qualitative interviews of youth with muscular dystrophy and congenital myopathy and their parents.
Age range
10 Years – 19 Years
Sex
ALL
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Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
Demographics Form
Timeframe: Through study completion, 1 year
Bullying and Cyberbullying: Perpetrators, Victims and Witnesses Survey (B&C:PVWS)
Timeframe: Through study completion, 1 year
Bullying Perspectives
Timeframe: Through study completion, 1 year
PedsQL(TM) 3.0 Neuromuscular Module
Timeframe: Through study completion, 1 year
KIDSCREEN-10 Index
Timeframe: Through study completion, 1 year
EPOCH Measure of Adolescent Well-being (EPOCH)
Timeframe: Through study completion, 1 year
Qualitative Interview
Timeframe: Through study completion, 1 year