The SUPPORT-TFMR Project: Strengthening the Understanding of Parental Preferences and Options for Receiving supporT during and following a Termination For Medical Reasons Project
Role
Principal Investigator
Description
Project led by Dr Sarah Fogarty to undertake research to inform the development of guidance for care related to termination for medical reasons (successful application - funded by Stillbirth Foundation to commence in 2025). The care and support parents receive around their stillbirth is pivotal to how they manage their grief journey. The loss of a baby before they are born, or shortly after, has wide-reaching and long-lasting impact for parents, family members, and communities. Captured within the experience of stillbirth are parents who have experienced a termination for medical reasons (TFMR). Australian surveillance of stillbirth includes unborn babies with a congenital anomaly who died through TFMR. In fact, congenital anomalies were the leading cause of stillbirth in Australia in 2021.(1) While strides have been taken in antepartum stillbirth care over the last 10 years, this care and support does not always meet the needs of parents who have experienced a TFMR. The TFMR journey has unique challenges that are not experienced by parents who have a spontaneous loss. These challenges can include complex medical information, tests and waiting, time-pressured decisions based on uncertain or ambiguous information, isolation from typical supports, procedures to end the life of the baby or induction to deliver early, and stigma, judgement or dismissal of the perceived “choice” around TFMR. This is evidenced by a participant in our research who states: “you get to make a decision which is a crappy decision that you don't want to make a choice on, and then you get to also carry that forever with you”.(2) Parents who have experienced a TFMR have indicated that even though ‘miscarriage, stillbirth or neonatal loss’ might be how their loss is classified, they can struggle to feel part of the pregnancy and neonatal loss communities. Research shows that the burden of TFMR is high for parents, and this is an area where non-judgemental, compassionate, and sensitive support
Date
01 Jan 2025 - 01 Jan 2027
Project Type
N/A
Keywords
fetal anomaly;pregnancy;termination of pregnancy;healthcare delivery;guidelines
Funding Body
Stillbirth Foundation Australia
Amount
0
Project Team
Pieta Shakes