Is neglect the first form of threat?

Bullying is a pervasive problem that transcends borders, impacting children and adolescents globally. Bullying is defined as an unwanted aggressive behavior that involves an actual or perceived power imbalance, is repeated or likely to repeated, and may cause harm or distress to the individual being bullied. Bullying manifests in numerous forms, such as physical (e.g., hitting, pinching, destroying or stealing belongings), verbal (e.g., name-calling, teasing, spreading rumors), social (e.g., excluding someone, scapegoating, humiliating others), as well as cyber (e.g., using the internet or text messaging to intimidate, put-down, spread rumors). Persons who experience bullying, perpetrators, and witnesses all play roles within bullying dynamics and individuals may take on multiple roles. Research has shown that at least one in three youth report having experienced bullying at some point in their life. In Canada, over 50% of school-aged youth have reported being bullied at some point in their life with these rates dropping to 40% during the covid-19 pandemic. Yet children and youth with chronic disorders experience even higher rates of bullying (Odds ratio [OR] = 1.65) than children without disabilities. Specifically, children with a chronic physical illness and/or physical disability (including obesity, asthma, chronic skin diseases, visual impairments, spina bifida/cerebral palsy) were more likely to be targets of all types of bullying including physical (OR = 1.47), social (OR = 1.47), verbal (OR = 1.67), cyberbullying (OR = 1.29), and illness-specific teasing (OR = 5.29), specifically if the illness was visible. Despite increasing awareness and anti-bullying strategies, bullying remains a significant issue with far-reaching consequences. Repercussions from bullying in children and youth are profound and mutli-faceted. Short- and long-term impacts of bullying include declines in physical and psychological well-being, social relations, and academic performance. Children and youth who have experienced bullying report increased risk of anxiety, depression, self-harm, and suicidal thoughts, with these risks extending into adulthood. A decline in physical and psychological well-being, social relations between peers and parents, and school environment have negatively impacted quality of life (QoL) of school-aged children and adolescents. Despite extensive research on bullying among children with visible and non-visible disabilities, there is a noticeable gap in research studies focusing on youth with progressive muscle weakness conditions or neuromuscular disorders, such as myopathies and spinal muscular atrophy (SMA). These neuromuscular disorders lead to significant physical challenges, requiring reliance on caregiver and assistive technologies. Particularly, youth with neuromuscular disorders may be impacted by bullying in other ways. For example, the psychological impacts may manifest as withdrawal or decreased communication not only with peers, but caregivers such as healthcare providers, leading to negative impacts on engagement in their medical care. Given these medical factors such as muscle weakness, difficulty ambulating and increased fatigue, as well as the risk of impact on engagement in care, it is imperative to understand the bullying experiences of youth with neuromuscular disorders.