Beth Shelton, a PhD student at the University of Illinois School of Social Work and the first certified perinatal mental health specialist in Memphis, Tennessee, and the Mid-South region, recognized early on the profound impact that a lack of trauma-focused care can have on the mental well-being of families who have experienced the loss of a baby.
Several years into her practice in Memphis, she met the program coordinator for the Butterfly’s Embrace program: a perinatal bereavement program based in Tennessee that supports families who have experienced pregnancy and infant loss.
“Their program was so unique and special,” she recalls. “Tucked away in this small rural hospital an hour from Memphis was this magical place that loved on families and supported them in this most vulnerable, tragic time.”
What began as a professional relationship between the two in sharing referrals, information and support has continued for almost a decade. “I have watched this program grow and develop into what, in my opinion, is the gold standard of Perinatal Bereavement care globally,” Beth continues.
Her recently published paper, Butterfly’s Embrace: A Work Systems Analysis of a Hospital-Based Perinatal Bereavement Program, discusses how “perinatal bereavement programs (PBP) in obstetrical and emergency departments can offer the potential of more supportive workflow and work environments for patients and health care professionals” by conducting a work system analysis.
Her hope is that by adding to this emerging research field, she can help in starting the conversation on a greater scale. “There are cavernous gaps in the literature about Perinatal Bereavement Programs across the world,” Beth explains. “Small geographical pockets are showing promising evidence, specifically Australia, Ireland, Spain, a region in China, and Korea. Internationally, there are very few countries that have national guidelines for perinatal bereavement care.”
The guidelines that do exist have been created within the last 5-10 years and are continuing to undergo empirical testing. At present, the United States has no existing guidelines for this care.
“Considering that across the globe 1 in 5 pregnancies will end in miscarriage prior to 24 weeks gestation and approximately 2 million pregnancies will end in in stillbirth after 24 weeks gestation,” Beth says, “the lack of care guidelines results in adverse outcomes not only for the families experiencing the perinatal deaths, but also the healthcare providers that support them.”
As a third year PhD student, Beth is busy with completing both coursework and qualifying papers. “I plan to focus my dissertation on a mixed-methods approach to evaluating the effectiveness of the training program Butterfly’s Embrace requires of its staff,” she says. “Research shows that feeling ill-prepared to provide appropriate care to families experiencing perinatal death leads to compassion fatigue, secondary traumatic stress and burnout in nurses. I want to explore the lived experience of the nurses that work with Butterfly’s Embrace and discover the impact this training program has on the confidence levels of nurses providing perinatal bereavement care.”
She hopes that this study will continue to expand and inform future researchers and policy makers on the importance of a Supportive Bereavement Environment. As an emerging field of study, there are currently limitations, such as a paucity of empirical evidence. But, as time and research both go on, Beth hopes that empirical evidence as to the scope of effectiveness, cost benefits and improvements to long term outcomes for both family and staff from established programs like this will demonstrate the impact similar programs can provide to communities.
“I’ll own how cheesy and idealistic this might sound,” she goes on to say, “but I truly do believe that we make the world a better place by making the world a better place for moms. Highlighting a program that supports families in their darkest hours in a way that honors their grief, their baby, their family, their needs, and their culture is my “Why”.”