Bullying is an epidemic in Canada with at least 1 in 3 Canadian youth reporting bullying victimization. Youth with disabilities are more likely to experience bullying. This study is the first of its kind to evaluate the bullying experiences of youth with a condition causing progressive muscle weakness. Participants reported high rates of bullying (83%), that they were bullied because of their appearance and disability, and that it occurred often at younger ages. Participants described helpful and unhelpful supports. The findings from this study have already informed changes to clinical bullying supports at participating neuromuscular clinics, and can be implemented by other institutions in Ontario. A report has been created using the outcomes of the study to provide recommendations to cope with and prevent bullying by youth and families for youth, families, schools and clinicians.

Bullying is a significant issue for youth that can result in a decline in health-related quality of life. At least 1 in 3 Canadian youth report being a victim of bullying, and youth with a disability are 1.65 times more likely to be bullied. The overall objective of the study was to determine the frequency and types of bullying experienced by youth with myopathies, as well as the facilitators and barriers experienced when victimized. A survey was completed by 29 participants at two pediatric neuromuscular clinics in Ontario and 14 participants consented to complete an interview. Twenty-four of 29 participants (83%) reported having been bullied at some point in their life (3 were bullied daily) compared to 30% in large-scale school-based studies. Verbal bullying was the most prevalent (88%), followed by social bullying (83%) and physical bullying (29%). The most common reasons identified for being bullied was because of their disability (62%) and their appearance (54%). Participants most often experienced bullying in primary school. Qualitative analysis of the interviews highlighted four themes: 1) Participants experienced stigma-based bullying due to their perceived socially de-valued characteristics; 2) Participants exhibited resilience aligned with a theoretical factorial model of resilience despite bullying victimization; 3) Participants identified personal and theoretical helpful and unhelpful supports; and, 4) Participants proposed bullying interventions. This study is the first of its kind to evaluate the bullying frequency and experiences of youth with myopathies. This study found that youth with progressive muscle weakness experience bullying at higher rates than school-based rates, as well as the importance of screening for bullying starting in primary school. Youth and their families provided practical suggestions to cope with and prevent bullying. A report with printable one pager recommendations by youth and families for youth, families, schools and clinics.

M. Chatur, C. Ippolito, L. McAdam p.20 Experiences of and persepctive on bullying in youth with myopathies. J Neuromuscul Dis. 2022:32(S1). https://doi.org/10.1016/j.nmd.2022.07.043