CHARGEing Forward

Sarah Sykes, a doctoral student in the School Psychology Program, raises awareness about bullying in CHARGE syndrome through her research. CHARGE is a rare genetic syndrome marked by multisensory impairment, medical challenges, and possible delays to development. The ability level of individuals with CHARGE syndrome varies, ranging from those who require life-long support to those who can live independently into adulthood. To learn more about the social implications of the syndrome, Sykes surveyed twenty-eight adults with CHARGE syndrome.   

Individuals with CHARGE syndrome typically experience a delay in social development. As a result, they are prone to bullying. To gain stronger insight into bullying in CHARGE syndrome, Sykes administered an online survey to study participants. She found that approximately sixty-eight percent of participants previously experienced bullying at school, fifty-five percent of participants experienced bullying in their place of employment, and forty percent of participants experienced cyberbullying. Many of those who experienced bullying also expressed having heightened rates of stress, anxiety, depression, and poor self-esteem, as a result.  

Participants in Sykes’ study were then asked how they coped with the bullying. Common coping mechanisms used by participants across multiple settings included avoidance, ignoring, and reaching out for support. In some cases, individuals indicated that they were unable to cope altogether during their school years, while others chose to leave their workplace as a result of bullying. By sharing these findings, Sykes hopes to bring awareness to the situation and validate the experiences of others living with CHARGE syndrome. Additionally, by informing parents and educational professionals about the prevalence of bullying found in her study, Sykes hopes to play a role in preventing it.   

Sykes was first introduced to CHARGE syndrome by her advisor Dr. Timothy Hartshorne, a faculty member in Psychology. Soon after, she joined Dr. Hartshorne’s lab and began her research on CHARGE syndrome. Although Sykes' research on bullying in CHARGE syndrome is coming to an end, she will remain part of the CHARGE syndrome community and attend conferences when possible.   

In the future, Sykes plans to become a school psychologist and use the knowledge she gained during her time as a researcher to positively impact students.

At CMU We Do Research, We Do Real World

Story by ORGS intern Hailey Nelson

April 2022