Doświadczanie choroby dziecka w rodzinie (na przykładzie zespołu Pradera–Williego)
Experiencing a Child’s Illness in the Family (on the Example of Prader-Willi Syndrome)

Author(s): Beata Lucyna Szluz
Subject(s): Sociology
Published by: Wydawnictwa Uniwersytetu Warszawskiego
Keywords: experiencing the disease; involvement in the disease; family; Prader-Willi Syndrome; rare diseases
Summary/Abstract: Prader-Willi syndrome is a complex genetic disorder characterised by a set of phenotypic traits, which include infantile hypotonia, short stature, and morbid obesity. A family living with a child with Prader-Willi syndrome (PWS) faces some unique challenges: How can siblings be helped to understand and support their brother or sister with PWS?; How can appropriate behaviour be encouraged in relatives who are resistant to maintaining, for example, food security?; How can a couple cope with the stress of living with a child who has special needs?; And how do caregivers take care of themselves in the midst of the often daily challenges of life with a person with PWS? Without support in these areas, a family can quickly find itself in crisis. PWS affects the entire family system. The article attempts to show and interpret the subjective experiences of the person (mother) whose biography includes raising the Prader-Willi syndrome child.

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