Abstract:

The research is part of a large-scale research investigation. The aim of this investigation was to describe the experiences of families in which a child was born with a disability, with a focus on the relationship between a parent (or other caregiver) and workers in education, social services and the health sector. The process of educating children with disabilities needs to be viewed comprehensively. The quality of life of these children and their families is also significantly influenced by the interdependence with the area of social services or the environment of health services. A qualitative approach was chosen as part of the research, where semi-structured interviews with seven families of children with disabilities were used to obtain data. The goal of the research investigation was to find out whether families of children with disabilities find themselves in situations where they perceive their child as a hostage. Furthermore, the aim was to describe whether parents feel like equal partners when they communicating with experts and what their experiences are with experts from the ranks of workers in education, social services and healthcare. Parents describe negative experiences especially in the field of communication with individual workers.

Keywords:

Parents of children with disabilities, power, powerlessness, risk factors, relationships.