The Psychosocial Impact of Rare Diseases among Children and Adolescents Attending Mainstream Schools in Western Australia

Autor/inn/en	Adama, E. A.; Arabiat, D.; Foster, M. J.; Afrifa-Yamoah, E.; Runions, K.; Vithiatharan, R.; Lin, A.
Titel	The Psychosocial Impact of Rare Diseases among Children and Adolescents Attending Mainstream Schools in Western Australia
Quelle	In: International Journal of Inclusive Education, 27 (2023) 12, S.1273-1286 (14 Seiten)Infoseite zur Zeitschrift PDF als Volltext Verfügbarkeit
Zusatzinformation	ORCID (Adama, E. A.) ORCID (Arabiat, D.) ORCID (Foster, M. J.) ORCID (Afrifa-Yamoah, E.) ORCID (Runions, K.) ORCID (Lin, A.)
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1360-3116
DOI	10.1080/13603116.2021.1888323
Schlagwörter	Foreign Countries; Diseases; At Risk Persons; Mental Health; Children; Adolescents; Parent Attitudes; Bullying; Social Bias; Interpersonal Competence; Barriers; Peer Relationship; Australia; Strengths and Difficulties Questionnaire + Suchen Sie Ihr Suchwort? Ausland; Disease; Krankheit; Risikogruppe; Psychohygiene; Child; Kind; Kinder; Adolescent; Adolescence; Adoleszenz; Jugend; Jugendalter; Jugendlicher; Elternverhalten; Mobbing; Interpersonale Kompetenz; Peer-Beziehungen; Australien
Abstract	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. Results showed that stigmatisation was experienced by 75.6% of participants, and almost half (46.4%) reported their child was bullied. In this sample, parents reported high sensory (vision and hearing) abilities, but low to moderate self-care competence in relation to social activities and peer relations. Almost half of the respondents (43.9%) reported mental health difficulties among their children. Children and adolescents with a rare disease have unique psychological and social issues. These findings highlight the need for greater efforts to meet the diverse psychosocial, physical and emotional needs of children diagnosed with a rare disease who attend mainstream schools in Western Australia. (As Provided).
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Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2024/1/01