Growing Up Well
A study of young Australians living with chronic illness
Overview
Young Australians living with a chronic health condition, compared to their peers, are more likely to be socially excluded, experience stigma, deal with mental health challenges and difficult living situations, find it challenging to continue their education, and enter the workforce - all while trying to manage their condition.
Current support for young Australians living with a chronic health condition tends to take a biomedical approach, focusing on supporting the person to manage their condition well. However, we have limited understanding in two key areas:
- the wider social impacts on young people and their families
- the social factors that shape how young people experience and manage their chronic health condition as they transition into adulthood.
Importantly, we need a better understanding of what matters most to young people and their
families in growing up well and how to best support them to address this.
The Study
A team of researchers at the University of Sydney and Anglia Ruskin University, in partnership with Epilepsy Action Australia and Asthma Australia, are leading a longitudinal qualitative study with young Australians aged 16 to 24, to explore the social, financial and educational aspects of growing up with a chronic health condition in Australia.
Project Stages
- Workshops with partner organisations, young people, family members and stakeholders to co-design the study.
- In-person or online interviews with young people aged 16 to 24, living with asthma or epilepsy, supported by innovative arts-based methods (e.g. video diaries, drawings, photography).
- Focus groups with family members of young people, and other stakeholders (i.e. educators, health professionals, consumer groups).
Impact
- co-create a suite of informational and educational resources on Healthtalk Australia for young people and their families, and key stakeholders to address the unmet social needs of young people with chronic conditions.
- drive evidence-based changes in policy and practice so young people can live well with chronic illness throughout their lives.
Research Team
Associate Professor Sophie Lewis
University of Sydney
Professor
Lorraine Smith
University of Sydney
Professor
Grace Spencer
Anglia Ruskin University
Dr Maja Moensted
University of Sydney
Dr Stephen Hughes
University of Sydney
Associate Professor Joanna Harnett
University of Sydney
Alana Munro
Research Associate
University of Sydney
Lisa Todd
Epilepsy Action Australia
Carol Ireland
Epilepsy Action Australia
Andrew Flynn
Asthma Australia
