Research | Search for research projects | Living with Loss: Development and evaluation of an online support program for pregnancy and baby loss

Living with Loss: Development and evaluation of an online support program for pregnancy and baby loss

Project Status Complete
Funding Organisation Stillbirth CRE
Organisation Lead Stillbirth CRE
Lead Investigator Siobhan Loughnan
Program Area Implementing Best Practice In Care After Stillbirth And In Subsequent Pregnancies
Topic Data And Novel Interventions To Improve Bereavement Care

Stillbirth and neonatal death are devastating pregnancy outcomes with enduring psychosocial and emotional effects on parents and families. Families need appropriate support, yet access to services is often limited. This project aims to develop an online support program for parents who have experienced stillbirth or neonatal death.

The LWL program was developed designed to address the cognitive, behavioural, emotional, relational and motivational impacts of bereavement normalising and validating individual grief experiences while avoiding the pathologization of grief. Developed by clinicians, researchers, parent support and advocacy organizations, and bereaved parents, the program incorporated specialized knowledge of perinatal bereavement care, mental health, and lived experiences of perinatal loss. The development process emphasised co-design principles, engaging end users and lay perspectives.

Qualitative interviews with parents and healthcare professionals identified barriers, enablers, and preferences for internet-based bereavement care support. The program included six modules covering topics highlighted by bereaved parents and healthcare professionals as important. In the absence of a Core Outcome Set (COS) for stillbirth and neonatal death, the six modules were aligned with the COS for coping and wellbeing in adult bereavement within palliative care settings. Content incorporated cognitive and behavioural approaches including mindfulness and compassion-focused therapy. The program was designed to be flexible, self-paced, and adaptable to parents’ needs in both the short and long term. Each module, designed to be stand-alone, included illustrated fictional parent stories, information addressing key topics and strategies, and 1–2 exercises to consolidate key points, including a grounding mindfulness or compassion-focused mediation. The program was delivered via a custom-built online learning system viewable on any computer, tablet, or smartphone with Internet connection. For more detail, please refer to the trial protocol (Loughnan et al., 2022)

In a randomised controlled trial, we evaluated the efficacy and acceptability of a self-guided internet-based perinatal grief program, Living with Loss (LWL), to support coping and wellbeing among bereaved parents following perinatal death.Eligibleparents, largely mothers, were recruited online and randomised to the intervention arm (n = 48) or a care-as-usual (CAU) control arm (n = 47). The LWL program comprised six internet-based modules completed over eight weeks. The primary outcome was psychological distress; secondary outcomes were perinatal grief intensity, anxiety, depression, and program satisfaction and acceptability. The LWL program reduced psychological distress at post-program compared with CAU. The program had moderate adherence rates and high program satisfaction. There were no differences in the secondary outcomes, and the effect on psychological distress was not sustained at three-month follow up.This study provides preliminary evidence for the utility of an internet-based perinatal grief support program to reduce psychological distress in the shorter term among bereaved parents. Further research is needed to determine how psychological distress can be minimised in the longer term, and whether self-guided internet-based support is effective for bereaved fathers and extended family members. Further research is also needed to investigate the effectiveness of the program in real-world settings.

RCT evaluation publication available here: https://www.tandfonline.com/doi/full/10.1080/15325024.2024.2415708

Western Pacific Regional Office of the International Stillbirth Alliance
Coordinating Centre, Stillbirth and Neonatal Death Alliance, Perinatal Society of Australia and New Zealand

Level 3, Aubigny Place
Mater Research Institute
Raymond Terrace,
South Brisbane QLD 4101
The University of Queensland Faculty of Medicine

Copyright © Stillbirth CRE