Psychosocial support needs for families living with craniofacial conditions
Project Team:
Prof. Rachel Roberts, Dr Amanda Osborn, Assoc. Prof. Diana Dorstyn
The University of Adelaide
Families living with craniofacial conditions often struggle to access high quality, evidence-based psychosocial support. These challenges occur
not only at the time of diagnosis, but also in subsequent years as the child encounters new challenges (e.g., commencement at school). Moreover, a craniofacial condition can affect all members of the family. Therefore, the provision of resources and tools that also help parents and siblings
is important.
The difficulties families experience were highlighted during the recently completed sagittal synostosis study by this research team. In many cases, parents reported mixed experiences with the health care system and its ability to adequately provide families with support to help their child navigate the social and psychological challenges of living with their craniofacial condition.
With funding from Craniofacial Australia, the aim of this project is to identify gaps in the current provision of psychosocial information to families. This research will enable patients and families with lived experience of craniofacial conditions to provide input into the types of psychosocial tools and resources that should be developed, and/or made readily accessible to families.
Anticipated outcomes include a manuscript for publication, thereby adding to the evidence-base of factors required in order to provide a high-quality person-centred health care service.
Additionally, this work will be presented at a suitable international conference. It is anticipated that this psychosocial support information will be hosted on a specific website that will provide a central hub for people nationally to access Australian-specific resources and tools. This ‘online support hub’ could be the Craniofacial Australia website, for example, or an independent portal.
We also congratulate this team on the publication of their previous study titled "Behavioural and psychological functioning of children and adults with Sagittal Synostosis". The results of their report have been published by Springer Nature and can be viewed here: