Living with Loss

Study 1: Development and evaluation of an online support program for pregnancy and baby loss – Complete

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.

Publication:

Loughnan SA, Ann L, Sara C, Chrissie A, Alison G, M. WA, et al. Living with Loss: Evaluating an Internet-Based Program for Parents Following Perinatal Death. Journal of Loss and Trauma.1-25.

Study 2: Evaluation of the effectiveness of an online support program for pregnancy and baby loss in routine care – In progress

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 3: Adaptation for early pregnancy loss and miscarriage, and subsequent pregnancies after miscarriage – In progress

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 4: Adaptation for parents navigating subsequent pregnancies after stillbirth and neonatal death – In progress

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.