Exploring the burdens and needs of parents caring for a child with Rett syndrome

Abstract

Introduction: Caring for a child with Rett syndrome is afflicted with special challenges for caregivers and also with restrictions in everyday-life. Aims: Available studies focus on life situations of parents with disabled children in general. This study specifies disease-specific burdens and needs of parents who are caregivers for a child with Rett syndrome. Giving affected parents a voice raises awareness in the society but also in care providers. It highlights possible scarcities or opens up scope for improvements. On long term changes in parental support can safe costs for the health system by improvement of their health status. Methods: A qualitative study based on the phenomenological approach was conducted. 15 parents out of 8 different German federal states were interviewed by telephone. Analysis was done according to summarizing content analysis (Mayring 2007).