Cranio Research Australia

17/08/2026

Our latest paper is now published — and importantly, it is open access, so anyone can read it for free.

“Lived experience as guidance” brings together the advice that 22 parents of children with craniosynostosis shared about what they had learned along the way — from finding good information and preparing for surgery, to seeking support, advocating for their child and looking after themselves.

What we particularly love about seeing this paper published is that it shows what can come from taking the time to participate in research.

These parents gave us their time and shared their experiences. Those conversations have now become published research and have helped inform practical resources that other families can actually use.

We’re now following the same process with our current lived-experience interviews with people with craniofacial conditions: listening first, then using what people tell us to help shape future resources and research.

If anyone over 8 years old has a craniofacial condition & they're happy to talk with me, they receive a $60 Coles gift card (plus my gratitude!) as a thank you for their time.

A huge thank you to every parent who contributed to this study. This is what sharing your experience can make possible.

Read the paper free here: https://doi.org/10.1177/13674935261476741

01/06/2026

Newly published research from our team has explored how parents of children with craniosynostosis use online forums for support.

The study looked at 753 posts from online parent discussions and found that families often turn to these spaces for emotional support, practical information, help with decision-making, and reassurance while navigating diagnosis and treatment.

The findings highlight something many families already know: craniosynostosis can feel overwhelming, especially early on, and parents often value hearing from others who have been through a similar experience.

This research helps show why clear information, compassionate care, and connection with other families are so important.

The free article is available here:

Objective: Craniosynostosis is characterised by the early fusion of cranial sutures, resulting in an abnormal head shape. This study examines the psychosocial impact of a child's craniosynostosis diagnosis on families, by analysing online forum discussions. While surgery is often needed to address a...

16/02/2026

Rachel and I (Amanda) were grateful to share our research with Craniofacial Australia’s community. To help improve future support and resources, we’re seeking lived experience stories from people aged 8+ who have a craniofacial diagnosis themselves. If that’s you, or someone you know, please reach out to me — it can help other families better understand what their craniofacial journey may look like. 💛

10/02/2026

Hi everyone 👋 A reminder that Adelaide University is currently recruiting Australians aged 8+ living with a craniofacial condition to take part in a friendly online chat about their lived experience.

This input will help shape better support and resources for families.

As a thank you, participants receive a $60 Coles/Myer gift card. 💛

If you know someone who might be interested, please share this post or tag/message them 💛

📩 To take part or learn more: DM us or email [email protected]

Call now to connect with business.

06/11/2025

Prof Rachel Roberts at Craniofacial Australia's "Lab Tour & Panel Event" - October 2025

L to R
Prof Rachel Roberts (University of Adelaide)
Prof Seb Dworkin (La Trobe University)
Prof Quenten Schwarz (University of South Australia)
Kerry Southwell (Operations Manager, Craniofacial Australia)
Christina Panagopoulos, Marketing and Fundraising Manager, Craniofacial Australia)

05/11/2025

YOUR STORY. YOUR VOICE. YOUR IMPACT.

Hi, I’m Dr Amanda Osborn, a psychology researcher at Adelaide University.

Our research team has been working closely with Craniofacial Australia to develop plain-English diagnosis summaries (tailored to the Australian context) and practical psychosocial resources for families — coming soon via Craniofacial Australia’s channels.

We’re also recruiting Australia-wide for anyone aged 8+ living with a craniofacial condition to take part in a friendly online chat (generally 20-30 mins long). We'd love for you to share your experiences so we can help improve care and resources for others! Participants receive a $60 Coles Myer gift card as a thank you ☺️

📩 Keen to take part or learn more? DM, phone, text or email [email protected]

IMPORTANT NOTE: If you’re seeing this via a shared support group post, I won’t be able to see or reply to comments there. Please message me/the page or comment on this original post and I’ll get back to you.

05/11/2025

Parents’ experiences of psychosocial support — new paper from our team 🎉
Psychosocial Support for Australian Families Impacted by Craniosynostosis: A Qualitative Study (2025).

Research conducted by the University of Adelaide, funded by Craniofacial Australia.
We interviewed 21 Australian parents about psychosocial support after diagnosis. Four themes emerged: communication & trust in clinical care, health-system process challenges, family support networks (strengths & gaps), and an absence of psychological support in the clinical journey. Parents asked for psychological assistance to be readily available as standard, family-centred care.

I’ll add the contact details for the free journal article in the comments — or email/DM me if you’d like help accessing it 😊 [email protected]

📣 𝗚𝗲𝘁 𝗶𝗻𝘃𝗼𝗹𝘃𝗲𝗱 𝗶𝗻 𝗼𝘂𝗿 𝗻𝗲𝘅𝘁 𝘀𝘁𝘂𝗱𝘆: 𝗜𝗳 𝘆𝗼𝘂’𝗿𝗲 𝟴+ 𝗮𝗻𝗱 𝗹𝗶𝘃𝗶𝗻𝗴 𝗶𝗻 𝗔𝘂𝘀𝘁𝗿𝗮𝗹𝗶𝗮 𝘄𝗶𝘁𝗵 𝗮 𝗰𝗿𝗮𝗻𝗶𝗼𝗳𝗮𝗰𝗶𝗮𝗹 𝗰𝗼𝗻𝗱𝗶𝘁𝗶𝗼𝗻, 𝘄𝗲’𝗱 𝗹𝗼𝘃𝗲 𝘁𝗼 𝗵𝗲𝗮𝗿 𝘆𝗼𝘂𝗿 𝘀𝘁𝗼𝗿𝘆.
"Please don't include any of your medical or contact details in the comments"

05/11/2025

Hearing from parents: insights on information needs 🎉
Information Needs of Australian Families Living with Craniosynostosis: A Qualitative Study (2025).

Research conducted by the University of Adelaide, funded by Craniofacial Australia.
We interviewed 21 Australian parents about the information they needed after diagnosis. Four clear themes emerged: wanting clear info quickly, practical hospital/surgery guidance, how to talk about the condition, and that the path is rarely clear. Parents reported difficulty finding credible, Australia-specific information, pointing to the need for timely, easy-to-access resources.

I’ll add the contact details for the free journal article in the comments — or email/DM me if you’d like help accessing it 😊 [email protected]

📣 𝗚𝗲𝘁 𝗶𝗻𝘃𝗼𝗹𝘃𝗲𝗱 𝗶𝗻 𝗼𝘂𝗿 𝗻𝗲𝘅𝘁 𝘀𝘁𝘂𝗱𝘆: 𝗜𝗳 𝘆𝗼𝘂’𝗿𝗲 𝟴+ 𝗮𝗻𝗱 𝗹𝗶𝘃𝗶𝗻𝗴 𝗶𝗻 𝗔𝘂𝘀𝘁𝗿𝗮𝗹𝗶𝗮 𝘄𝗶𝘁𝗵 𝗮 𝗰𝗿𝗮𝗻𝗶𝗼𝗳𝗮𝗰𝗶𝗮𝗹 𝗰𝗼𝗻𝗱𝗶𝘁𝗶𝗼𝗻, 𝘄𝗲’𝗱 𝗹𝗼𝘃𝗲 𝘁𝗼 𝗵𝗲𝗮𝗿 𝘆𝗼𝘂𝗿 𝘀𝘁𝗼𝗿𝘆.
"Please don't include any of your medical or contact details in the comments"

05/11/2025

Parents’ experiences paper from our team 🎉
Diagnostic and Surgical Experiences of Australian Parents Navigating Their Child’s Craniosynostosis: A Reflexive Thematic Analysis (2025).

Research conducted by the University of Adelaide, funded by Craniofacial Australia.
We interviewed 17 Australian families about the diagnosis-to-surgery journey. Themes included getting the first signs taken seriously, advocating for care, waiting for surgery, finding the “right” path, and life with a “different”-looking child. Families asked for clear information, coordinated care, and access to psychological support—with many impacts falling more heavily on mothers.

Due to copyright issues, the link to the journal article can not be provided here. Feel free to contact me if you'd like a free copy of the full article emailed to you though: DM or [email protected]

📣 𝗚𝗲𝘁 𝗶𝗻𝘃𝗼𝗹𝘃𝗲𝗱 𝗶𝗻 𝗼𝘂𝗿 𝗻𝗲𝘅𝘁 𝘀𝘁𝘂𝗱𝘆: 𝗜𝗳 𝘆𝗼𝘂’𝗿𝗲 𝟴+ 𝗮𝗻𝗱 𝗹𝗶𝘃𝗶𝗻𝗴 𝗶𝗻 𝗔𝘂𝘀𝘁𝗿𝗮𝗹𝗶𝗮 𝘄𝗶𝘁𝗵 𝗮 𝗰𝗿𝗮𝗻𝗶𝗼𝗳𝗮𝗰𝗶𝗮𝗹 𝗰𝗼𝗻𝗱𝗶𝘁𝗶𝗼𝗻, 𝘄𝗲’𝗱 𝗹𝗼𝘃𝗲 𝘁𝗼 𝗵𝗲𝗮𝗿 𝘆𝗼𝘂𝗿 𝘀𝘁𝗼𝗿𝘆.
"Please don't include any of your medical or contact details in the comments"

05/11/2025

Craniosynostosis and Autism/Social functioning paper from our team 🎉
Autism and Social Functioning in Individuals with Nonsyndromic Craniosynostosis: A Systematic Review and Meta-Analysis (2025).

Research conducted by the University of Adelaide, funded by Craniofacial Australia.
This meta-analysis combined results from 12 studies (2,001 participants). Overall impact isn’t yet clear: a small proportion had an autism diagnosis in the included studies, and some children scored in the clinical range on screening measures or showed social delays. Sensible next step: screen where possible and offer supports tailored to each child.

I’ll add the contact details for the free journal article in the comments — or email/DM me if you’d like help accessing it 😊 [email protected]

📣 𝗚𝗲𝘁 𝗶𝗻𝘃𝗼𝗹𝘃𝗲𝗱 𝗶𝗻 𝗼𝘂𝗿 𝗻𝗲𝘅𝘁 𝘀𝘁𝘂𝗱𝘆: 𝗜𝗳 𝘆𝗼𝘂’𝗿𝗲 𝟴+ 𝗮𝗻𝗱 𝗹𝗶𝘃𝗶𝗻𝗴 𝗶𝗻 𝗔𝘂𝘀𝘁𝗿𝗮𝗹𝗶𝗮 𝘄𝗶𝘁𝗵 𝗮 𝗰𝗿𝗮𝗻𝗶𝗼𝗳𝗮𝗰𝗶𝗮𝗹 𝗰𝗼𝗻𝗱𝗶𝘁𝗶𝗼𝗻, 𝘄𝗲’𝗱 𝗹𝗼𝘃𝗲 𝘁𝗼 𝗵𝗲𝗮𝗿 𝘆𝗼𝘂𝗿 𝘀𝘁𝗼𝗿𝘆.

"Please don't include any of your medical or contact details in the comments"