“Stillbirth is a traumatic grief.”
Amanda Martin, Project Coordinator for the Hummingbird Project and bereaved parent, shares that this sentiment took years to internalize: women and families who experience a stillbirth have experienced a trauma. Despite the major impact stillbirth has on women and families, it is an area that faces strong stigma, and is severely lacking in research, expertise, and support.
That’s why Dr. Lynn Farrales, Principal Investigator on The Hummingbird Project, is working to address this gap and create a resource that can reach women and families who need support wherever they are.
The Hummingbird Project was developed from prior work led by Still Life Canada (SLC), a stillbirth and neonatal death education, research, and support society based in Vancouver, BC. SLC conducted a participatory-based research project, through which families with lived experience identified needs, objectives, and methodology for research, as well as how findings would be used.
Local collaborations between community clinicians, researchers, and SLC led to the launch of The Hummingbird Project. Through focus groups, The Hummingbird Project research team learned that most support for women and families is based out of Vancouver. This caused many challenges for the focus group participants including time, cost and the ability to even get there.
“Accessibility was really one of the things that started us toward podcasts. Initially we looked at doing group medical visits and then videos, but podcasting gave us more flexibility around timing and the ability to interview experts from around the world,” Martin and Dr. Farrales explain. “The ability to sit and listen to a podcast and really reflect on what is being said is so important when you’re talking about such sensitive topics. The Hummingbird Project podcast series is designed so the listener can either listen to the episodes in the order they were recorded or they can choose the topic which is most relevant to them at that moment.”
Other important factors leading the team toward podcasting is that it not only increases geographic accessibility, but also access to support at any time of day, and at any point of a user’s journey.
“It’s not conspicuous – it’s not like they’re bringing out a video,” explains Dr. Farrales, “so it’s something they can do on their own time.”
The research team has collaborated closely with an advisory committee comprised of physicians, midwives, nurses and bereaved families to help ensure that their work closely mirrors the needs of the community. From the start of the project, research has been conducted in tandem with the development of a resource to begin addressing the need for support as soon as possible.
“It’s not often that you hear about people having a miscarriage or having a baby who was stillborn, unless they are someone close to you,” Martin says. “Everyone has a story of their own – they know someone, they went through it, something happened – and by opening up about their experiences it gives permission, in a sense, to the other person to share their story.
“The more we discuss the topic of stillbirth through focus groups and podcasts the more we are helping to destigmatize having a baby who is stillborn.” Martin says. “This podcast series is designed for parents who have recently experienced having a baby who was stillborn all the way through deciding if they are going to try and have another baby. By creating this resource parents can share this podcast series with their support systems to allow them better insight into what the parents are experiencing.”
The team emphasizes that health care providers and the greater community may benefit from listening to the podcasts themselves and then subsequently sharing it with their patients.
On October 5th, 2019, the inaugural Butterfly Run is being hosted in Vancouver, BC. It is a 2k/5k memorial run and walk raising awareness around infertility, miscarriage, stillbirth and perinatal loss. This year partial proceeds are being used to support The Hummingbird Project.
“We hope to offer support and compassion for families currently facing these challenges, and reduce the stigma surrounding these topics. Being a bereaved parent is a path no one should have to walk alone,” the Butterfly Run team states. The event is now sold out for the 2019 year but people can still participate by making a donation to BC Women’s Hospital via their Running Room fundraising page.
If you’d like to be notified when The Hummingbird Project launches its podcasts, email Amanda Martin.