Author Identifier (ORCID)
Esther Adama
ORCID : 0000-0002-7771-2722
Diana Arabiat
ORCID : 0000-0003-2325-0398
Mandie Foster
ORCID : 0000-0002-3100-0885
Ebenezer Afrifa-Yamoah
ORCID : 0000-0003-1741-9249
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.
Keywords
adolescent, bullying, children, education, mental health, rare diseases, school, stigma
Document Type
Journal Article
Date of Publication
2021
Publication Title
International Journal of Inclusive Education
Publisher
Taylor & Francis
School
School of Nursing and Midwifery / School of Science
RAS ID
32884
Funders
Edith Cowan University - Open Access Support Scheme 2021
Telethon Kids Institute
National Health and Medical Research Council
Grant Number
NHMRC Number : 1148793
Creative Commons License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 4.0 License.
Comments
Adama, E. A., Arabiat, D., Foster, M. J., Afrifa-Yamoah, E., Runions, K., Vithiatharan, R., & Lin, A. (2021). The psychosocial impact of rare diseases among children and adolescents attending mainstream schools in Western Australia. International Journal of Inclusive Education, 27(12), 1273-1286. https://doi.org/10.1080/13603116.2021.1888323