Living with loss: A new online program for perinatal loss

Living with loss: A new online program for perinatal loss

Around 3,000 families experience perinatal loss each year in Australia. The loss of a baby to stillbirth or neonatal death is a devastating life event that is often associated with enduring psychological distress, including prolonged and complicated grief, and has profound effects on quality of life.

The care that parents and families receive following perinatal loss is a major contributor to immediate and longer term wellbeing. Improving perinatal bereavement care, including the care families receive in community after discharge from hospital, is an urgent priority in Australia. Yet support services can often be limited, particularly in rural regions, and waitlists are long. Online or internet-based programs can help expand the availability and accessibility of evidence-based support options for parents and health care professionals in Australia.

This project aims to improve perinatal loss support for parents through the development and implementation of a new evidence-based and self-guided online grief support program for pregnancy and baby loss.

The ‘Living with Loss’ (LWL) program consists of 6 flexible modules covering a range of topics and strategies that parents have highlighted as important. The program was recently evaluated in a rigorous research trial to determine how useful and helpful the program was for bereaved parents. Bereaved mothers who accessed the LWL program experienced significant improvements in symptoms of psychological distress at the end of the 8-week study period, compared to those in the usual care control group who did not access the new program. The study protocol is available and study results will be published in 2024.

The Living with Loss program will be launched nationally in 2024 as a support option for bereaved parents, family members, and health care professionals in Australia. The program will be coupled with practice facilitation activities, including online educational resources for GPs and other health care professionals, designed to enhance primary care practitioner skills in providing support and appropriate referral following perinatal loss.

Project investigators

Project investigators engaged with and drew upon the expertise of partners within universities, research institutes, and hospital and health services across Queensland and Australia. The program was developed by a team of clinicians, researchers, parent support and advocacy organisations, and bereaved parents who collectively provided specialist knowledge of perinatal bereavement care and lived experience of perinatal loss.

  • Professor Vicki Flenady, Director, National Health and Medical Research Council (NHMRC) Centre for Research Excellence in Stillbirth (Stillbirth CRE) (Lead)
  • Dr Siobhan Loughnan, Postdoctoral Research Fellow, NHMRC Centre for Research Excellence in Stillbirth (Stillbirth CRE) (Lead)
  • Associate Professor Fran Boyle, Research Social Scientist, Institute for Social Science Research UQ, NHMRC Stillbirth CRE
  • Professor David Ellwood, Professor of Obstetrics & Gynaecology and Director of Maternal-Fetal Medicine, Griffith University, Co-director, NHMRC Stillbirth CRE
  • Associate Professor Dell Horey, Epidemiologist, La Trobe University, NHMRC Stillbirth CRE
  • Associate Professor Emily Callander, Health Economist, Health Services Management, University of Technology, NHMRC Stillbirth CRE
  • Professor Claire Jackson, Director Primary Care Research, Primary Care Clinical Unit Faculty of Medicine, UQ
  • Ms Belinda Norman, Bereavement Midwife, Mater Mothers Hospital
  • Ms Sara Crocker, Research Assistant, NHMRC Stillbirth CRE
  • Ms Ann Lancaster, Psychologist, NHMRC Stillbirth CRE
  • Dr Julie Dean, Psychologist and Social Scientist, Institute for Social Sciences Research, NHMRC Stillbirth CRE
  • Dr Chrissie Astell, Senior Research Assistant, NHMRC Stillbirth CRE
  • Ms Laura Singline, Research Assistant, NHMRC Stillbirth CRE
  • Dr Antonia Shand, Maternal Fetal Medicine Specialist, Royal Hospital for Women
  • Ms Leigh Brezler, Former CEO, Stillbirth Foundation Australia
  • Ms Keren Ludski, CEO, Red Nose
  • Ms Amanda Bowles, CEO, Bears of Hope
  • Ms Emma Porter, Perinatal Loss Coordinator, Mater Mothers Hospital

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