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 …

“Coronavirus Changed The Rules On Everything”: Parent Perspectives On How The Covid‐19 Pandemic Influenced Family Routines, Relationships And Technology Use In Families With Infants, Rebecca Hood, Juliana Zabatiero, Desiree Silva, Stephen R. Zubrick, Leon Straker

Research outputs 2014 to 2021

This study explores how the first wave of the COVID‐19 pandemic influenced family routines, relationships and technology use (smartphones and tablet computers) among families with infants. Infancy is known to be an important period for attachment security and future child development, and a time of being susceptible to changes within and outside of the family unit. A qualitative design using convenience sampling was employed. A total of 30 mothers in Perth, Western Australia participated in semi‐structured interviews by audio or video call. All mothers were parents of infants aged 9 to 15 months old. Interviews were audio‐recorded and transcribed, and …