Przeglądanie według Temat "rare diseases"

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ДИТИНА З УСКЛАДНЕНОЮ ІНВАЛІДНІСТЮ В СІМ’Ї. ДОСЛІДЖЕННЯ ВИПАДКУ
(Львівський національний університет імені Івана Франка, 2016) Szluz, Beata
Children with multiple disabilities have unique needs and challenges. Many of these children struggle to communicate their wants and needs, to freely move their body to access and engage their world, and to learn abstract concepts and ideas. Professionals and families working together must identify the individual supports each child needs to ensure that the child with multiple disabilities is an active participant in all aspects of their lives and makes meaningful progress toward valued life outcomes. The situation of persons with rare and multiple disabilities is difficult, especially in the field of their psychosocial functioning. Their participation in social life, as well as vocational and social activity, are still rated unsatisfactory. Additionally, for many years individuals with rare diseases have remained outside the main thrust of health and social assistance systems. Families of children with disabilities have long held the scrutiny of researchers and professionals. Dominant discourse on families of children with disabilities, based on assumptions of grief, tragedy, and unmitigated hardship, are strongly influenced by the medical model, which constructs disability as a deficit and as predominantly burdensome for both individuals and families. Historically, this deficit-based construction of disability has informed the questions and methodologies in research concerning these families. Rather than examining whether parents of children with disabilities experience significant stress or chronic grief, medical-model based studies begin with assumptions of pathology and seek to evaluate the extent of psychological distress. Additionally in research based in medical model perspectives, the source of the psychological distress experienced by parents is located in their children's impairments. Conspicuously absent from these studies is reflection on the sociocultural constructions of disability, and the contexts in which the experiences of families are situated. These inquiries also fail to consider how pervasive, deficit-based hegemonic discourses on disability contribute to familial stress and other negative emotions. The perspectives of families of children with disabilities are not represented in this research, as familial experiences are reduced to statistical analyses of negative outcomes.