New online program created to support bereaved families

Content warning: This article contains information and images some readers may find distressing as it relates to stillbirth and the loss of a newborn. 

A free online program has been developed to address a gap in perinatal bereavement support options for Australian mothers and their families, particularly in rural communities. 

The National Health and Medical Research Council Centre of Research Excellence in Stillbirth (Stillbirth CRE) based at Mater Research and The University of Queensland has created a new online program to support bereaved parents and families, called Living with Loss (LWL).  

In Australia, around six babies are stillborn each day, and for one in three stillbirths, the cause is unknown. 

The new program aims to provide another option of support for families after losing a baby and provides information and evidence-based strategies to support coping and wellbeing. It is delivered in a flexible, self-guided digital format.  

Led by Postdoctoral Researcher and Co-Lead of the Care Around Stillbirth and Neonatal Death research program Dr Siobhan Loughnan, LWL is a self-guided and flexible program that aims to increase access to readily available, evidence-based, and effective support. 

“The death of a baby during pregnancy or soon after birth is devastating—but a reality faced by over 3,000 Australian families each year,” Dr Loughnan said. 

“Grief, distress, and other multifaceted emotions are natural responses following pregnancy and baby loss, and the quality of care that families receive around this time, including ongoing support provided in community settings, are major contributors to immediate and long-term wellbeing.” 

Dr Loughnan said the program was developed to address a gap in perinatal bereavement support options and to reduce some of the social, geographical, and logistical barriers that often limit engagement with support. 

She said it would benefit those who faced barriers to accessing and engaging with traditional bereavement support, which is particularly limited in rural communities. 

Regional NSW midwife and mum Lilly Castor, 32, lost her first child Vincent to stillbirth two years ago and said the program, which she completed recently, had “identified a gap in healthcare services”. 

Mrs Castor, from Orange in the Central Tablelands region, is now keen to promote the program to other families who have experienced the loss of a child. 

“Our district has a high perinatal mortality rate and this service is needed,” she said. 

Mrs Castor, who has since had a baby girl, Trixie, now 10 months old, said the program provides a number of simple coping strategies to assist in navigating difficult emotions or thought patterns and how to face challenging situations like returning to work, birthdays or anniversaries. 

“Whether you experienced your loss one year ago or 10 years ago, this program is beneficial,” she said. 

“This program would have been really helpful for me in those early months after losing Vincent, when my grief was really dark and challenging.” 

Dr Loughnan said there was perceived stigma for seeking help, long waiting periods for professional and peer support, and lack of services in rural regions.  

“LWL has been designed so that it can be accessed privately at any time, and any place,” Dr Loughnan said.  

The program was evaluated in a ‘gold-standard’ research study to ensure it was effective and helpful as a support option following pregnancy and baby loss, said Dr Loughnan. 

“Our evaluation showed that parents reported earlier reductions in feelings of distress after completing the program, compared to those who did not access the program, and that the program was helpful and valuable to parents in navigating their own experience of grief and loss,” Dr Loughnan said. 

“An economic evaluation was also conducted and found that if the LWL program had been available to the 3,000 families impacted by loss in 2021, the public health system could have saved over $3.4 million.” 

The program was created with a team of bereaved parents, parent support and advocacy organisations, health professionals, and researchers who collectively provided specialist knowledge of perinatal loss care and support and lived experience of perinatal loss. 

LWL is free and available nationally to all individuals impacted by pregnancy and baby loss. It can be accessed via the Stillbirth CRE’s Care Around Loss page – https://carearoundloss.stillbirthcre.org.au/   

The Living with Loss project was supported by the Australian Government’s Medical Research Future Fund (MRFF) Rapid Applied Research Translation program grant awarded to Health Translation Queensland, the Stillbirth CRE (funded by the National Health and Medical Research Council (NHMRC) and Mater Foundation.