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.
As antenatal screening continues to advance, a greater number of expectant parents will receive unexpected news during pregnancy and be forced to grapple with uncertainties. Despite the large focus on screening processes, the National Clinical Care Guidelines: Pregnancy Care provides only one brief line about care for women after an anomaly is identified by ultrasound, which is to refer women to trained providers for counselling and ongoing support.
However, there is no specific training that addresses the psychosocial aspects of prenatal diagnosis. Furthermore, the counselling that parents receive is medical counselling, ever so important yet focused on information giving, rather than the counselling considered to assist people to explore their emotions, thoughts and the meaning of such information. While some parents may receive genetic counselling, access is not equitable and is often limited to a single session if available.
Healthcare and therapy providers have called for specific training, in the hope to reduce the emotional toll and reduce potential longstanding mental health consequences. Similarly, parents who have moved through the unexpected have called for change and improvement.
We are developing the first national, multidisciplinary training program focused specifically on the psychosocial side of prenatal diagnosis.
To learn more about this project, please click here to visit the project page: Improving the experience
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.
Past work includes:
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 meets three-monthly with invited speakers who present about a range of topics related to the diverse experiences of prenatal screening and diagnosis.
We now have over 515 members, that’s 515+ health and allied health professionals who have committed to improving the experience of prenatal diagnosis, the pathways of support and improving psychosocial outcomes of parents who move through the unexpected.
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 (Survey – now closed, study in write up).
Co-producing training resources about the experience of receiving a prenatal diagnosis of a fetal anomaly. (Currently recruiting parents with lived experience – see the Participant Information Sheet and Study flyer for more information).
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 consultation to ensure that the needs of parents who receive a prenatal diagnosis are adequately addressed.
Current, ongoing consultation:
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 a two-monthly newsletter to share news, opportunities and research.
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)