Stöd och belastning – föräldrars erfarenheter av personlig assistans till barn med autism och utvecklingsstörning

Abstract

Sweden has a system of personal assistance for children with autism and/or intellectual disabilities. Through the usage of qualitative interviews, this study investigates eight parents’ experiences of personal assistance for their children. The interviews were analyzed using the Interpretative
Phenomenological Analysis and Bronfenbrenner’s (1979) ecological model. Personal assistance is described by the parents as important but the findings also point towards several problems. For example, the system is not adapted to the families’ routines and interests, personal assistants are described as unskilled, and moreover the child has little influence over his or her situation. In the paper we discuss the importance of exchanging knowledge between families and professionals and the need to further understand how parents work their way through the system, acting as assistants,
experts, and decision makers.