Work Package 2, this stream, aims to gain a comprehensive understanding of the health, wellbeing and health service experiences of adolescents and adults with IVSCs. Research in this stream will seek to understand: their perspectives of their health and wellbeing experiences and needs; what risk and protective factors are associated with their health and wellbeing outcomes; how do health service experiences, preferences and utilisation vary by biographic and psychosocial factors; what are the health and wellbeing needs of family members; and what are the experiences of their family members in accessing health care?
We will do this primarily via the following means:
- Conducting interviews with people with IVSCs and their families to better understand their health and wellbeing needs and experiences.
- Co-designing a new population survey with people with IVSCs to establish a national understanding of the health and wellbeing of people with IVSCs.
- Exploring the acceptability of linking people’s administrative health records to their survey data to examine people’s health service use.
- Developing new methodologies to inform a longitudinal population study
Research team

Adam Bourne

Kate Burry

Morgan Carpenter

Bridget Haire

Bonnie Hart

Martin Holt

Ashleigh Lin

Julie Mooney-Somers

Christy E. Newman

Ingrid Rowlands

Penelope Strauss
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On 21 May 2025, the InterLink website relaunched as a new information hub providing depathologised, trauma-informed resources on physical, mental and sexual health, patient rights and sexual violence prevention for people with innate variations of sex characteristics (IVSC), also known as intersex variations and differences of sex development. It contains resources on diagnosis-specific innate variations,…
InterLink resources launch events
The InterLink website is relaunching as a new information hub providing depathologised, trauma-informed resources on physical, mental and sexual health, patient rights and sexual violence prevention for people with innate variations of sex characteristics (IVSC). InterLink is a pioneering Australian professional and peer-led community-based psychosocial service, addressing the health disparity and stigma facing the IVSC…