Whether you have been through stillbirth or neonatal death, you provide care for bereaved families, or are interested in research to improve the care they receive, we welcome you.
The Bereavement Working group (BeWG) is a diverse group of parents and family members, care providers, researchers, and many others. Our shared vision is to improve access to quality care for all those touched by stillbirth or neonatal death. This includes support for mothers, fathers, and families as well as those who care for them across a range of healthcare and community settings.
Please read on for more information about our vision and activities. If you think you might be interested in joining our work, please contact us.
About us
Who are we?
As with all ISA working groups, membership of the BeWG is open to bereaved parents, and anyone working them, providing care or doing research. Among our current members we have bereaved mothers and fathers, midwives, researchers, anthropologists, epidemiologists, obstetricians, neonatal doctors, psychologists, social workers and nurses.
We work collaboratively on a global scale, with members from the UK and Europe, Australia, North America, Latin America, India, South-East Asia and sub-Saharan Africa.
The co-chairs are Dimitrios Siassakos and Fran Boyle:
Dimitrios Siassakos is an ISA board member and Associate Professor / Reader and Honorary Consultant in Obstetrics at University College London and University College Hospital. He is involved in research in stillbirth care and prevention, and has more than 100 publications, including the Lancet Stillbirth Series.
There are two events that made him passionate about improving bereavement care:
1. When I authored the RCOG guideline for management of stillbirth I became aware there was so much more than needed to be done to understand parents and improve care
2. As a senior obstetric trainee some time ago, I became aware of some parents who were refused a caesarean birth for their stillborn baby without proper discussion of their concerns and needs. I decided I had to do something to support both parents and staff to have these difficult discussions.
Fran Boyle is an Associate Professor at The University of Queensland, Australia and a Principal Investigator with the Australian Centre of Research Excellence in Stillbirth (Stillbirth CRE) where she co-leads the Care after Stillbirth program. Her research focuses on people’s experiences of health, health services and the health system.
Fran is passionate about improving perinatal bereavement care and ensuring that all parents receive the best possible care when a baby dies, in both hospital and community settings. She co-led the development of the Perinatal Society of Australia and New Zealand/Stillbirth CRE Clinical Practice Guideline for Respectful and Supportive Perinatal Bereavement Care.
Like many who are drawn to research and practice in this area, Fran’s involvement began with her own lived experience of the loss of a baby soon after birth. She has had a long involvement with parent support organisations, including Red Nose and Sands Australia.
What do we do?
The purpose of the BeWG is to hear the voices of families and those who care for them, and use this to form an agenda for research and action. Our aim is to understand families’ experiences and to take action to improve the care they receive.
We welcome any new members who would like to help make a difference to bereavement care following stillbirth and neonatal death. We particularly encourage fathers, and those from low- and middle-income countries to consider joining – we want to hear your voices! If you have expertise in any of these areas, we would like to hear from you!
We meet quarterly, online and the next meeting is scheduled for the 8th June 2021.
Resources
For bereavement-related resources, see our Resources tab.
Coming soon, we are developing a registry of bereavement support organisations, which includes over 400 organisations and 200 contact individuals. Check back for updates on this!
Research
Have a look at these studies which our members have been involved in:
- The RESPECT Study for consensus on global bereavement care after stillbirth was co-authored by BeWG co-chair Dimitrios Siassakos, and highlights 8 core principles of care
-
Parents’ experiences of care offered after stillbirth: An international online survey of high and middle-income countries
As a group some of the areas we are working on at the moment are:
- What are the experiences of families and professionals caring for them in low- and middle-income countries? How do these experiences compare to the experiences of families and professionals in high-income countries?
- What bereavement care training tools exist, and how effective are they?
- What are the experiences of bereaved fathers? How do we ensure that bereaved fathers voices are heard and represented in stillbirth and neonatal death research?
If you have ideas for research projects or would like to collaborate with us on research, please contact us
Bereavement care training
We believe that supporting and training those who provide care is essential to improving bereavement care. Have a look at our registry (coming soon!) for training available from local organisations.
IMPROVE is an open-access online training package designed to support those providing care for families who have experienced stillbirth. It contains 6 modules, which focus on topics such as communication with parents, autopsy and placental examination and psychological aspects of perinatal bereavement.
The SUPPORT course is led by Dimitrios Siassakos and his team at UCL. This is a 1 day, interactive course for healthcare professionals. Through a series of core and additional modules, it aims to equip professionals with knowledge and skills to feel confident when providing care to bereaved parents.
Get involved
Join the BeWG
If you think you might be interested in joining, please contact us.
Upcoming dates for the 2021 BeWG virtual meetings can be found on the Events page.
Write a blog
If you might be interested in writing a blog, please contact us.
You might want to share your story as a parent, grandparent, midwife, doctor or another perspective entirely. Maybe you want to tell others about something that was really helpful for you like a support group or online forum. Or perhaps you have seen bereavement care being particularly well done and want to talk about what can be learnt from this.
Or, you may have other ideas – please contact us! We are always glad to discuss other potential blog topics.
Social media
Let us know what you think about our work:
Twitter #EndStillbirths @ISAStillbirth or on our
Facebook page (don’t forget to like us!).
… or contact us by email at info@stillbirthalliance.org