Medicine and Health Sciences Commons^™

Parents' Experiences Of Children With A Rare Disease Attending A Mainstream School: Australia, Mandie Foster, Esther Adama, Diana Arabiat, Kevin Runions, Rena Vithiatharan, Maggie Zgambo, Ashleigh Lin

Research outputs 2022 to 2026

Purpose:

To explore the perceptions of parents who had a child or adolescent (6-18 years) diagnosed with a rare disease who attended a mainstream school in Western Australia.

Design and methods:

A cross-sectional online survey was conducted with 41 parents of children with a rare disease. Here we report the findings of 14 open-ended questions on their experience of illness-related factors and impact on school-related social activities, such as sports, school camps and leadership roles whilst their child with a rare disease attended a mainstream school in Australia. Responses were analysed using an inductive thematic content approach.

Results:

We identified …

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. …

Psychological Symptoms In Chinese Nurses May Be Associated With Predisposition To Chronic Disease: A Cross-Sectional Study Of Suboptimal Health Status, Jinxiu Zhu, Wenjuan Ying, Li Zhang, Gangyi Peng, Weiju Chen, Enoch Odame Anto, Xueqing Wang, Nan Lu, Shanshan Gao, Guihai Wu, Jingyi Yan, Jianfeng Ye, Shenglin Wu, Chengzhi Yu, Minghui Yue, Xiru Huang, Nuo Xu, Pengxiang Ying, Yanhong Chen, Xuerui Tan, Wei Wang

Research outputs 2014 to 2021

© 2020, The Author(s). Background: Suboptimal health status (SHS) is a reversible state between ideal health and illness and it can be effectively reversed by risk prediction, disease prevention, and personalized medicine under the global background of predictive, preventive, and personalized medicine (PPPM) concepts. More and more Chinese nurses have been troubled by psychological symptoms (PS). The correlation between PS and SHS is unclear in nurses. The purpose of current study is to investigate the prevalence of SHS and PS in Chinese nurses and the relationship between SHS and PS along with predisposing factors as well as to discuss the …