A qualitative study: Barriers and support for participation for children with disabilities

BACKGROUND This qualitative-exploratory study examined the barriers to participation amongst children with disabilities in Lusaka, Zambia, from the mothers' perspective. OBJECTIVES The objectives of this study were to understand how mothers of children with physical and cognitive disabilities who engaged their children in community-based rehabilitation (CBR) services in Lusaka, Zambia, perceived and described (1) the level of support they received and the barriers they encountered in terms of their child's meaningful social participation; (2) the use and awareness of these barriers to identify and pursue advocacy strategies; and (3) hopes for their child's future. METHODS Data were collected through semi-structured interviews with each mother in her home. Results: Findings revealed both support and barriers to the child's social participation in relationship to their family, friends and community. Support also came from the CBR programme and mothers' personal resourcefulness. Mothers identified their child's school, their immediate environment and financial burdens as barriers to participation as well as their own personal insecurities and fears. Strategies to overcome barriers included internal and external actions. The mothers involved in the study hope their child's abilities will improve with continued CBR services. Some mothers described a bleak future for their child due to a lack of acceptance and access to education. CONCLUSION The findings of this study suggest the significant role the mother of a child with a disability plays in her child's social participation. Recommendations include enhancing CBR programming for families, especially for mothers, and advocating on behalf of children with disabilities and their families to attract the attention of policy makers.