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Participation in and Barriers to Recreation Participation in CHARGE Syndrome

Gretchen I. Imel, Timothy S. Hartstorne, Lillian J. Slavin, Sandra K. Kanouse


Participation in recreational activities is a critical component in an optimal quality of life. However, individuals with disabilities often face many barriers to traditional recreational activities. Individuals with CHARGE syndrome commonly experience multisensory impairments, balance problems, and breathing problems, making participation particularly challenging. The purpose of this study was to obtain parent perspective on their child’s participation in recreation and the barriers they encounter. Parents of 71 individuals with CHARGE reported their children were actively participating in a wide range of recreational activities. However, there were barriers to participation with lack of knowledge of opportunities being the greatest barrier. Balance and breathing issues were related to less participation, but not sensory impairments including deafblindness. 

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Recreation participation; barriers; deafblindness; CHARGE Syndrome

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