RESUMO
This study identified the baseline participation rates for 101 teens and young adults ages 10-32 years old with a diagnosis of spina or lipomenigocele bifida in various domains: school, employment, community activities, physical activity and peer social relationships. The goal of the study was also to identify barriers to community participation. Our findings demonstrate that overall participation is low in several domains. Community participation is low with only 30% partaking in an organized community activity at least once a week. Multiple individual, family, and environmental barriers were identified by participants and their family. The most frequent barriers identified were low motivation (38%), lack of information (25%) and time constraints (21%). Barriers need to be addressed on an individualized basis as well as addressing the community as a whole. Future plans are to intervene based on the barriers and reassess participation at 6 months and a year with the goal of increased long term participation, employment, quality of life and social relationships.