Academic Scientific JournalsThe care system of children with Angelman syndrome in the United States of America – mothers’ experiences
Keywords:
disability, rare genetic disorder, Angelman syndrome, care systemAbstract
The article undertakes the subject of the care system of children with rare genetic disorder in the United States of America, basing on experiences of mothers of children with Angelman syndrome. The aim of the research was to determine what experiences have parents of children with Angelman syndrome with the care system in the United States. The research was focused on following areas of support/care: organization of support for children with Angelman syndrome in terms of government aid and public education; the material/tangible aid; meritorical/ informational support and emotional support. They showed the complexity and diversity of the respondents’ experiences, which was influenced (among others) by place of living (each of the respondents lives in a different US State).
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