Living with Loss

Study 1: Evaluation of the effectiveness of an online support program for pregnancy and baby loss in routine care

Living with Loss (LWL) is an online program that aims to provide another option of support for parents who have experienced pregnancy or baby loss. This ongoing study aims to evaluate the effectiveness of the program in real-world settings. We are interested in understanding how parents’ access and use the program, and where further improvements can be made.

The LWL program was carefully created by 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 features six modules which share helpful strategies for navigating grief and loss in the short and longer term. The modules are:

• Understanding grief
• Coping with grief
• Thinking about grief
• Facing hard situations
• Strengthening relationships
• The future

Previous evaluations: LWL was evaluated in gold-standard research study to ensure it is effective and helpful as a support option following pregnancy and baby loss. Findings from the randomised controlled study showed that parents reported significantly lower feelings of distress after completing the LWL program compared to those who accessed usual care only – publication available here. Parents who completed LWL also reported that the program was helpful and valuable in navigating grief and loss. Findings from an economic evaluation highlighted that if the LWL program had been available to all parents in Australia who experienced perinatal loss in 2021 (n=3,016), the public health system could have saved over $3.4 million.

LWL can be accessed via the Stillbirth CRE’s Care Around Loss page – https://carearoundloss.stillbirthcre.org.au/

Study 2: Adaptation for early pregnancy loss and miscarriage, and subsequent pregnancies after miscarriage

In partnership with Pink Elephants Support Network, this project aims to adapt the LWL program and tailor specifically to early pregnancy loss and miscarriage, and subsequent pregnancies after miscarriage.

Study 3: Adaptation for parents navigating subsequent pregnancies after stillbirth and neonatal death

This planned project aims to further adapt the LWL program and tailor specifically to subsequent pregnancies after stillbirth and will be based on the 2024 edition of the CASaND Guideline and parent guideline resource. 

Both adaptation projects will be led by a team of bereaved parents, health professionals, and researchers who will collectively provide specialist knowledge of perinatal loss care and support and lived experience of perinatal loss.