Reflektovanie zmien života rodín detí s muskulárnou dystrofiou typu Duchenne očami samotných rodičov
The Reflection of Changes in Family Life of Children with Duchenne Muscular Dystrophy by their parents

Summary/Abstract: In Slovakia, the topic of Duchenne muscular dystrophy from the viewpoint of the parents is insufficiently reflected in research. Duchenne muscular dystrophy is rare nerve – muscular disease, which affects only boys. Disease influence the whole family life. The aim of the authors' study was to find out and describe the life reality of families with a member who suffers from this disease. The authors used the qualitative research and technique of focus groups (total no. of focus groups = 3). The research sample were parents of children with Duchenne muscular dystrophy (n = 26, 16 women, 10 men). According to research results four situations with which the parents of these children meet in everyday reality are clear. Situations can be divided into two groups: situations inside the family (acceptance of the diagnosis, changes in the family life, care for carers) and situations outside the family (parents versus services and utilities).

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