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ERIC Number: EJ1397764
Record Type: Journal
Publication Date: 2023
Pages: 14
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1360-3116
EISSN: EISSN-1464-5173
The Psychosocial Impact of Rare Diseases among Children and Adolescents Attending Mainstream Schools in Western Australia
Adama, E. A.; Arabiat, D.; Foster, M. J.; Afrifa-Yamoah, E.; Runions, K.; Vithiatharan, R.; Lin, A.
International Journal of Inclusive Education, v27 n12 p1273-1286 2023
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.
Routledge. Available from: Taylor & Francis, Ltd. 530 Walnut Street Suite 850, Philadelphia, PA 19106. Tel: 800-354-1420; Tel: 215-625-8900; Fax: 215-207-0050; Web site: http://www.tandf.co.uk/journals
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Identifiers - Location: Australia
Identifiers - Assessments and Surveys: Strengths and Difficulties Questionnaire
Grant or Contract Numbers: N/A