Meet the Researchers...
PROJECT: Psychosocial support needs for families living with craniofacial conditions
RESEARCHERS: Prof. Rachel Roberts, Dr Amanda Osborn and Assoc. Prof. Diana Dorstyn
LOCATION: The University of Adelaide
Summary
The aim of this support needs study was to identify gaps in the current provision of psychosocial support information to families impacted by craniofacial conditions around Australia.
Parents have reported they experience great uncertainty and high levels of anxiety, from when their child is diagnosed, through to, and after surgery – a time period that often covers many months.
Unfortunately, parents have reported mixed experiences with the health care system across Australia, but it is critical that high quality, up-to-date and comprehensive online psychosocial support and advice is available to them.
This study enabled parents with children who have been diagnosed with a craniofacial condition to provide input into the types of psychosocial support tools and resources that should be developed for them, and/or made readily accessible to families.
Project Breakthroughs
We undertook online interviews with 23 craniofacial parents around Australia, totalling over 18 hours of conversation. They shared their experiences and provided suggestions that will assist in providing a smoother journey for other families in the future. We are immensely grateful for their time and emotional energy in discussing what was often a traumatic period in their lives.
Parents told us they found it extremely difficult to source trusted, reliable, pertinent information related to their child’s condition. Many stated that the ‘health system’ gave them little or no information and that they were responsible for informing themselves. Although information about craniosynostosis is readily available on the internet, parents were often concerned that it was not relevant to their child, that the source was not credible, or that the information was based on subjective opinion rather than being evidence-based.
Parents also outlined that they often received little or no psychosocial support. Many spoke about their craniofacial journey in terms of ‘trauma’ and ‘survival’. Parents did, however, also acknowledge that they often did not consider addressing their own emotional turmoil until their child’s treatment and recovery was complete.
Project Outcomes
Conferences:
Appearance Matters 10 Conference in Bristol, UK in June 2024
Australian Psychological Society’s Festival of Psychology national conference in May 2025
Manuscripts:
Information needs of Australian families living with craniosynostosis: a qualitative study (accepted, The Cleft-Palate Craniofacial Journal)
Other manuscripts currently being prepared focus on social support needs, experiences around diagnosis and surgery, and support provided by online forums
Impact on the Future
Parents’ suggestions centred around the potential for online resources. Multiple parents spoke, unprompted, about the possibility of developing an online, publicly available, central repository of information. This information hub could provide critical information such as the different types of craniosynostoses and their treatment in Australia.
This information will be tailored to the specific policies and processes that characterise Australia’s state-based health services.
Timely delivery of psychosocial supports, some of which could be offered online, was another consideration - particularly for those families residing in rural and regional Australia.
