Community participation of families of children with profound intellectual and multiple disabilities in South Africa

Background Families struggle to support family members with profound intellectual and multiple disabilities (PIMD), especially in low resourced settings where formal services may not be available. Method The adapted Family Community Participation survey, measuring perceptions of community participation, was administered to 67 primary caregivers of children with PIMD in Cape Town by community-based rehabilitation workers. Results Families were most satisfied going to religious activities and getting together with family and friends. They were most dissatisfied with doing activities together in public and working or volunteering outside the home. Barriers to participation included negative attitudes, insufficient money and unavailability of community activities. Transportation, safety and security were additional challenges. Conclusions Participants advocate awareness raising, community support and provision of services to address barriers to community participation. Families should be consulted on community issues to integrate their specific family needs into the overall needs of the community.