our work

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.

Education and training

The first national training program

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

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:

  • Gidget Foundation, Perinatal Mental Health Symposium, August 2024: Invited presentation, Holding it Together and Falling Apart: Opportunities to Improve Psychosocial Outcomes for Expectant Parents Who Receive a Fetal Diagnosis 
  • Perinatal Society of Australia and New Zealand Annual Congress, March 2024: Poster presentation, Experiences of Working With Parents Who Receive a Prenatal Diagnosis and Perspectives on Psychosocial-Focused Training 
  • ASUM webinar, February 2024: Experience of a fetal anomaly, within the clinic and beyond 
  • ACMHN International Mental Health Nursing Conference, Presentation, Mental health nurse potential to improve psychosocial support for parents who receive a prenatal diagnosis, September 2023.
  • Marce Society and Helen Mayo House Joint Perinatal Mental Health Conference, Presentation, Striving for equitable access to holistic care for parents
    who receive a prenatal diagnosis of a fetal anomaly, September 2023
  • Perinatal Society of Australia and New Zealand, Perinatal Ethics Special Interest Group Webinar, Panel Speaker: Dealing with uncertainty, October 2022
  • ASUM2022, Presentation, Value-laden terms, what are they and how to avoid them? September 2022
  • ASUM2022 Discussion session – Invited speaker, September 2022
  • TAAHC Women’s Health Forum, Presentation, Improving psychosocial outcomes associated with prenatal diagnosis: a co-designed research and training protocol, July 2022
  • Perinatal Society of Australia and New Zealand, pre-congress Perinatal Ethics Committee Workshop, Presentation, A parent perspective on perinatal ethical issues, May 2022
  • Perinatal Society of Australia and New Zealand Congress 2022, Poster, Making the experience of prenatal diagnosis better together, May 2022
  • ASUM Communicate and collaborate: Parent-centred obstetrics care Presentation, Parent experience: the impact of receiving news of a fetal anomaly, March 2022
  • Australian College of Midwives event presentation, Working with women who have received a prenatal diagnosis of a congenital anomaly, April 2021
  • Goulburn Valley Health, Perinatal ECHO presentation, The psychosocial aspects of prenatal diagnosis
  • Australian College of Midwives Magazine, Australian Midwifery News publication, Working with women who have received a prenatal diagnosis of a congenital anomaly, 2021
  • Centre of Perinatal Excellence online resources, Coping with unexpected news at your ultrasound, Seeking help following the news of a congenital anomaly, Advice for family and friends following news of a congenital anomaly

Mental Health and Prenatal Diagnosis MHPN Online Network

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:

  • Peer worker/ lived experience advocates sessions – to support and strengthen advocacy and partnership opportunities
  • Case Collabs – case based discussion to explore complexities and psychosocial aspects of prenatal diagnosis
  • Solutions focused sessions – for systems based problem solving, and more.

To learn more or join the network, please click here to visit the network site.

Research and consultation

Research

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.

Consultation service

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:

  • Parent resources for organisations
  • NIPT related ARC-funded study

Prior consultation:

  • Review and suggestions for parent facing information about coping with a prenatal diagnosis for Miracle Babies.
  • Review and feedback of research survey to ascertain parents perspectives’ about information and options for a particular fetal diagnosis.
  • Reviewed and provided feedback to national parent-facing information about congenital anomalies
  • Contributed to the Queensland Health, Queensland Clinical Guidelines, Preconceptions and prenatal genetic screening new clinical guideline.
  • Review and feedback of parent resources for Miracle Babies Foundation.
  • Review, feedback and endorsement of the Prenatal Screening for Chromosomal Conditions Including Down Syndrome Practice Resource, developed by Down Syndrome Queensland with funding from Queensland Health
  • Review, feedback and endorsement of the Guidelines for Parent-centred Communication in Obstetric Ultrasound by ASUM
  • Review and feedback on the development of an app to support parental decision-making regarding prenatal screening

Awareness and advocacy

Advocating for psychosocial support for all

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.

Submissions to inquires and public consultations

Connection

Some News - TTU Newsletters

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:

Some News, Sept 2023

Some News, May 2023

Some News, Feb 2023

Some News and an Opportunity, November 2022

Advisory groups

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)