The psychosocial impact of rare diseases among children and adolescents attending mainstream schools in Western Australia
Bibliographic Data
| ID | 12578485 |
|---|---|
| Authors | Esther Adama (0000-0002-7771-2722, Edith Cowan University, corresponding author), Diana Arabiat (0000-0003-2325-0398, Edith Cowan University), Mandie Foster (0000-0002-3100-0885, Edith Cowan University), Ebenezer Afrifa‐Yamoah (0000-0003-1741-9249, Edith Cowan University), Kevin Runions (0000-0002-8770-8743, Telethon Kids Institute, The University of Western Australia, Nedlands, Australia), Rena Vithiatharan (0000-0001-7797-571X, The Kids Research Institute Australia), Angel Lin (0000-0002-4054-0242, Telethon Kids Institute, The University of Western Australia, Nedlands, Australia) |
| Year | 2021 |
| Volume | 27 |
| Issue | 12 |
| Pages | 1273-1286 |
| Publication date | 2021-02-22 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | International Journal of Inclusive Education (JOURNAL) |
| Journal identifiers | ISSN: 1360-3116 • E-ISSN: 1464-5173 |
| Publisher | Taylor & Francis (PUBLISHER • GB) |
| DOI | 10.1080/13603116.2021.1888323 |
| OpenAlex | W3131382319 |
| Language | EN |
| Citations received | 4 |
| References cited | 37 |
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
Developmental psychology · Disease · Mainstream · Mental health · Perception · Psychiatry · Psychosocial · Strengths and Difficulties Questionnaire · Autism Spectrum Disorder Research · Clinical Psychology · Genetics and Neurodevelopmental Disorders · Genomics and Rare Diseases · Medicine · Psychology
Stigma of visible and invisible chronic conditions
Bullying Prevalence Across Contexts
School Bullying
Stigma and its public health implications
Health-related stigma
Psychometric Properties of the Strengths and Difficulties Questionnaire
Normative data for the strengths and difficulties questionnaire in Australia
Inclusion and equity in educational services for children with rare diseases
An analysis of the Revised Olweus Bully/Victim Questionnaire using the Rasch measurement model
| Citations per year | 1 |
|---|---|
| Citation span | 2022 - 2026 (5) |
| Highly cited | No |