Daily life experiences of families determine the service delivery needs of children with disabilities; views of parents and service providers from three districts in Sri Lanka

Abstract

Abstract Parents and service providers are the key care providers for children with disabilities (CWD) and understand their living circumstances best. These children are often invisible and face many challenges to full participation within their own communities. A qualitative phenomenological action research was carried out in three districts of Sri Lanka to explore the perspectives of parents and the service providers on the needs of CWD and how those were met by the present services. This qualitative study included interviews with families, and focus group discussions with service providers. Data was analyzed using a manual thematic analysis. The parents and service providers identified the needs under three main themes. The need for activity and participation, education and rehabilitation. The parents related the needs to the practical daily experiences of families while service providers identified these based on their experiences and knowledge about the medical conditions. Parents identified the public health midwife as the best first contact primary health care worker to coordinate services. The families from Sri Lanka defined initiatives to accomplish a service delivery model which would enable better inclusion of the children in community life.