Social and Behavioral 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. …

Factors Affecting Hepatitis C Treatment Intentions Among Aboriginal People In Western Australia: A Mixed-Methods Study, Amineh Rashidi, Peter Higgs, Susan Carruthers

Research outputs 2014 to 2021

Objective: The aim of this study was to identify the hepatitis C treatment intentions of Aboriginal people living with hepatitis C virus (HCV) in Western Australia. Methods: This study used a mixed-methods design. In the cross-sectional survey, 123 Aboriginal people who inject drugs and self-report as living with hepatitis C completed a purpose-designed questionnaire. In the qualitative phase, 10 participants were interviewed about the factors influencing their future intentions to undertake hepatitis C treatment. Results: Analysis of the survey data revealed significant associations between an intention to undertake hepatitis C treatment and support, community attachment, stable housing and stigma. In …

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 …

Pastoral Care In Education, Lydia Hearn, Renee Campbell-Pope, Joanne House, Donna Cross

Research outputs pre 2011

EXECUTIVE SUMMARY

1. During the past decade, there has been growing recognition the school environment plays a major role in the social and emotional competence and wellbeing of children. As a consequence, increasing national and international commitment has been directed towards the development of Health Promoting Schools2, with efforts being made to assess how curriculum and pastoral practice can best contribute to students’ social, emotional, physical and moral wellbeing. Within Australia, the National Safe Schools Framework3 has set as a key priority the importance of achieving a shared vision of physical and emotional safety and wellbeing for all students …