We welcome collaboration and partnership. We know that some professionals and organisations are championing psychosocial care and providing wonderful support to parents and providers – we seek to ensure this is equitable for all.
Some of our current and recent work is shared below in the interactive boxes – click to open and read more.
We are developing the first national, multidisciplinary training program focused specifically on the psychosocial side of prenatal diagnosis.
Head over to our training platform to learn more: https://throughtheunexpected.online/
Thanks for the Liptember Foundation for funding this training and the research to inform the development. Thanks to our many wonderful collaborators!
Presentations and publications provide a means to advance awareness of the psychosocial aspects of prenatal diagnosis and work towards the aim to improve the experience for parents and providers. We are available to present at your organisation or event.
Academic publications of our research:
Johnson, B., Shakes, P., & Maylea, C. (2024). Prenatal testing technologies in Australia: Unintended clinical and emotional complexities in underprepared systems. Social Science & Medicine, 361, 117368. https://doi.org/10.1016/j.socscimed.2024.117368 [Open Access – no pay wall]
Other presentations and publications:
In collaboration with the Mental Health Professional Network, we have established an online network of professionals with an interest in the psychosocial aspects of prenatal diagnosis. The network has grown to 600 health and allied health professionals, peer workers and lived experience advocates.
We host regular sessions including:
To learn more or join the network, please click here to visit the network site.
In partnership with RMIT University, James Cook University and La Trobe University we are undertaking important research to fill gaps in knowledge and care related to the psychosocial aspects of prenatal diagnosis.
Current studies include:
Perspectives on training for health and allied health professionals who work with women who are receiving or have received news during pregnancy of a possible or confirmed fetal anomaly or variation.
Co-producing training resources about the experience of receiving a prenatal diagnosis of a fetal anomaly.
A review of the psychosocial health and wellbeing outcomes of women who received a prenatal diagnosis of a fetal anomaly or variation.
A content analysis to determine if and how Australian standards and guidelines address the psychosocial health of parents who receive a prenatal diagnosis of a congenital anomaly or variation.
We are available for collaboration and consultation to ensure that the needs of parents who receive a prenatal diagnosis are adequately addressed.
Current, ongoing consultation/advisory:
Prior consultation:
We aim to improve the experience of prenatal diagnosis and access to support. In doing so, we work towards the reduction of distress and mental health challenges associated with prenatal diagnosis. In order to create lasting change, we seek to tackle the systemic issues and gaps that complicate the experience. Our advocacy will address areas that matter to parents moving through a prenatal diagnosis, and to those who support and assist parents through this time and beyond.
We advocate for further attention to the psychosocial needs of parents, and for equitable access to interventions. We want all people, from all locations around Australia, to find the support they need to be informed, supported and empowered.
We advocate for training and support for healthcare providers and peer workers. We hope for a future where all providers have the time and confidence to provide person-centred, empathetic and value-free care and have support systems to balance the emotional weight of working within prenatal diagnosis.
We produce somewhat-sporadic newsletters to share research, opportunities and news in this space.
We would love to hear form volunteers who with to help with this role!
You can download past copies here:
More information coming soon
Novel diagnostic tools are often deployed before targeted therapies are developed, tested, or available and before their psychosocial implications are explored. (Werner-Lin et al., 2019)