Diseases 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. …

Alternative Interventions For Children Coping With Chronic Conditions: A Critical Review Of The Literature, Nina M. Pelsi, Kim S. Amer

DePaul Discoveries

Reduction of stressors and anxiety levels in adolescents with chronic illnesses is a critical concept in pediatric health care in America today. The many stressors associated with chronic illness include displaying physical and mental differences, social stigma, financial difficulty, and family stress. These stressors may affect the adolescent’s ability to learn and cope in everyday life. The current research was a critical review of the literature examining studies done with adolescents coping with chronic diseases and illnesses. The aim was to analyze the most efficacious non-pharmacological methods for reducing stressors in adolescents with chronic illness. A critical review of the …

Characteristics Of Children Attending Asthma Camp In Nevada, Priyank Shetty, Sheniz Moonie, Amy Beaulieu, Christopher M. Aquino

Nevada Journal of Public Health

The purpose of this study was to assess asthma trigger knowledge of camp attendees and the measure of agreement between physician and parent assessment of the children’s asthma severity. This study is based on cross-sectional data provided by the American Lung Association (ALA) and those children participating in summer asthma camps in Las Vegas and Reno, Nevada. Fifty-six children participated in the camp in August of 2008. The study results suggest a significant positive correlation between physician and parent assessment of asthma severity. With increasing asthma severity there was a relative increase in the number of school days missed among …

Protecting Hope: Situation Analysis Of Vulnerable Children In Uganda 2009, Sam Kalibala, Lynne Elson

HIV and AIDS

The Government of Uganda has focused attention on the problem of orphaned and other vulnerable children through a number of policies, regulations, and initiatives. In 2004, the Ministry of Gender Labor and Social Development developed the National OVC Policy, aimed at improving the quality of life for poor and vulnerable children, such as children who have been orphaned, children who are living on the streets, children who are at risk of abuse, and children exposed to situations of armed conflict. However, despite the many efforts to improve the circumstances of vulnerable children in Uganda, policymakers, donors, and program managers still …

Revisiting The Regulation Debate: The Effect Of Food Marketing On Childhood Obesity, Nicole E. Hunter

The University of New Hampshire Law Review

[Excerpt] “Despite the widespread concern regarding childhood obesity, there is broad divergence of opinion regarding responsibility for the crisis. Whether the government, food industry, or parents are accountable has become the focus of much debate. Public health groups have attempted various strategies to confront childhood obesity, such as litigation, legislation, and government regulation. While many researchers and advocates agree that government should play an affirmative role with respect to childhood obesity, they are very much divided over what that role should be. For example, although none of these acts has become law, eighty-six bills have been proposed regarding obesity since …

Book Review: Bacvarov K. (Ed.) 2008. Babies Reborn: Infant/Child Burials In Pre- And Protohistory. Proceedings Of The Xv World Congress Uispp (Lisbon, 4-9 September 2006) 24, Bar S1832., Anastasia Tsaliki

Dr Anastasia Tsaliki, PhD

No abstract provided.

Eliciting Facial Expressions In Children With And Without Down Syndrome, Orietta Coz

Master's Theses

This study investigated facial expressions of children between the ages of 10 and 15 years with Down Syndrome (experimental group) and compared them to typically developing children (control group). Elicitation of facial expressions was carried out through showings of video clips. Trained observers were used to code expressions of happiness, anger, and disgust from video recordings that were made of the children’s reactions while they watched the video clips.

I hypothesized that Down Syndrome children will not differ from typically developing children in the frequency of elicited happy expressions. However, I expected them to differ in the frequency of elicited …