Part of the book: Huntington's Disease
The purpose of the study described in this chapter was to explore children’s and parents’ views of how a neurodegenerative disease in a parent influences the daily life of the child. Focus groups were carried out with nine families of children, adolescents and parents with and without Parkinson’s disease, Multiple Sclerosis (MS) and Huntington’s disease. Each group met twice over a period of 4 weeks. Data were transcribed and analysed using qualitative content analysis. The results explored the meaning of the two categories: consequences in daily life and influence of disease on children. These categories emerged out of the following subcategories: economy, responsibility, living with personal assistants, being and feeling, being different, activities and the symptoms of the disease. A parent’s disease has an impact on the individual child who is affected emotionally and psychologically, and with regard to practical issues and basic needs. The parent’s and the family’s needs for support create a conflict between the child’s rights for health, well‐being and privacy and the needs and rights of the parent with the disease for high quality care. The negative impacts also relate to lack of information and knowledge about the disease and the family’s need for economic support.
Part of the book: Caregiving and Home Care