Barriers to Physical Activity for Children with CHARGE Syndrome: A Descriptive Study

CHARGE syndrome is a low incidence multiple disability that is the most common genetic cause of deafblindness in youth. Research findings have revealed that young children with CHARGE syndrome develop their motor milestones later and perform with significantly lower scores in balance and motor competence than their sighted and hearing peers. The purpose of this study was to determine the most prevalent barriers for physical activity in children and youth with CHARGE syndrome. Fourteen children and youth with CHARGE syndrome completed The Physical Activity Barriers Questionnaire for Youth with Visual Impairment either alone or with the support of their parents. Findings indicated that youth with CHARGE syndrome faced many personal, social, and environmental barriers to physical activity. Implications illuminated the need to educate future professionals and current teachers on the needs of children and youth with CHARGE Syndrome.