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Full-Text Articles in Medicine and Health Sciences
The Psychosocial Impact Of Rare Diseases Among Children And Adolescents Attending Mainstream Schools In Western Australia, Esther A. Adama, Diana Arabiat, Mandie Foster, Ebenezer Afrifa-Yamoah, K. Runions, R. Vithiatharan, A. Lin
The Psychosocial Impact Of Rare Diseases Among Children And Adolescents Attending Mainstream Schools In Western Australia, Esther A. Adama, Diana Arabiat, Mandie Foster, Ebenezer Afrifa-Yamoah, K. Runions, R. Vithiatharan, A. Lin
Research outputs 2014 to 2021
Living with a long-term medical condition is associated with heightened risk for mental health and psychosocial difficulties, but further research is required on this risk for children and adolescents with a rare disease in the educational setting. The aim of this study is to describe parents’ perceptions of the psychosocial impact of rare diseases on their school-aged children in Western Australia. A cross-sectional survey of 41 parents of school-aged children and adolescents diagnosed with a rare disease completed an online questionnaire. Questions related to their perceptions of health-related stigma, bullying, social competencies and mental health difficulties faced by their child. …