Diseases Commons^™

Covid-19 In Western Australia: ‘The Last Straw’ And Hopes For A ‘New Normal’ For Parents Of Children With Long-Term Conditions, Stephanie Smith, Mary Tallon, James Smith, Lauren Jones, Evalotte Mörelius

Research outputs 2022 to 2026

Background: Children with long-term conditions are vulnerable due to the treatments required for their conditions. Since the start of the coronavirus disease 2019 (COVID-19) pandemic, Western Australians experienced restrictions that changed daily life activities but were able to return to some of their previous routines due to the restrictions. Aim: The study explored the stress experiences of parents caring for children with long-term conditions during COVID-19 in Western Australia. Design and Participants: The study was codesigned with a parent representative caring for children with long-term conditions to ensure essential questions were targeted. Twelve parents of children with various long-term conditions …

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 …