by Jenna Somers
After consulting with the palliative care team, , MEd’08, found herself speaking with a mother about honoring her daughter鈥檚 legacy.
鈥淥ne of the ways we can do that is through handprint art, since handprints and fingerprints are unique to each person. Would you like to make something like that?鈥� said Boles, a child life specialist in the pediatric intensive care unit at Monroe Carroll Jr. Children鈥檚 Hospital at Vanderbilt.
鈥淟egacy?鈥� said the mother. 鈥淢y daughter鈥檚 legacy is so much bigger than anything you can fit on that square.鈥� She gestured to the canvas Boles held in her hand.
鈥淢y daughter鈥檚 legacy is so much bigger than anything you can fit on that square.鈥�
The daughter was dying of a medical condition she had battled for years. Throughout those years, she was loved by her family, by the close-knit community at her special needs school, by her friends. On social media, they celebrated her with a hashtag.
Boles agreed with the mother. In fact, this encounter reminded her of something she regularly offered as a child life specialist鈥� 鈥渓egacy building interventions鈥濃�攚hich often resembled a set of painted handprints or even a plaster statue of a hand mold. But the question remained: do those objects actually make a difference in the scope of family life and loss?
It was a question without much research behind it, but hospitals wanted to support families through the grieving process, to give them something by which to remember their child and to help them feel connected in their grief. Boles needed to research the concept of legacy to know whether her profession could better serve families.
鈥淲e were trying to fix something we thought changed the grief process鈥攍egacy鈥攚ithout even knowing what legacy is, let alone if it does change the grief process,鈥� said Boles, now an assistant professor of the practice at Vanderbilt Peabody College.
鈥淲e were trying to fix something we thought changed the grief process鈥攍egacy鈥攚ithout even knowing what legacy is…”
After earning her master of education in applied child studies at Vanderbilt, Boles spent eight years as a child life specialist at St. Jude Children鈥檚 Research Hospital. She helped teenagers and families understand diagnoses and treatment procedures, especially the parts most challenging for teenagers: hair loss and limb loss, changes to brain function, relationships, identity. She helped them process the real possibility of their own deaths. One teenager she supported published an editorial that appeared in a pediatric nursing journal. Print copies arrived on her mother鈥檚 doorstep a few days after the girl died, a week after her 18th birthday.
Boles also developed coping plans with children that focused on enjoyable activities they could still participate in, as well as leaning on peer support networks and building those networks with other children in the hospital. She offered teen programs like arts and crafts, music, cooking and sports groups. Every year she helped organize a prom at the hospital to make up for adolescent milestones the patients missed back home. Throughout these moments, the question of legacy kept coming up.
While at St. Jude, Boles completed her Ph.D. in educational psychology at the University of Memphis. After graduating, she worked at the Children鈥檚 Hospital at Vanderbilt where that poignant moment with a grieving mother spurred the next decade of her research.
What does legacy mean?
What does the word mean to you? What experiences in your life make you think of the word legacy? When someone says the word, how do you feel? How would you describe your legacy or your child鈥檚 legacy? What are some things about legacy we should know?
These questions guide Boles鈥� research with families to uncover how people define legacy and how they honor the legacies of dying children. She has interviewed parents whose newborns never got to leave the hospital and parents whose children died on the cusp of adulthood, who may have lived their entire lives with a medical complexity. She has interviewed dying children and the medical professionals caring for them.
鈥淣one of the families or children have ever said that legacy is a handprint or a hand mold,鈥� Boles said.
Some parents thought of legacy as personal characteristics or the opportunities they wanted for their child that the parents didn鈥檛 have in life. Others thought of legacy as disrupting familial patterns of poverty or abuse. Children as young as six described legacy as what people do that helps others in the future.
鈥淪ome parents who experienced perinatal loss or the loss of an infant talked about their child鈥檚 legacy as the name they worked hard to choose for that child, how it reflects the virtue they saw in them,鈥� Boles said.
鈥淎nother family puts little rubber ducks all over town on the baby鈥檚 birthday because his nursery was decorated with ducks, and they want the ducks to continue bringing joy to everyone the way he brought joy to them.鈥�
Boles recently completed a study with families whose children have medical complexities and who often cannot accomplish as much as other children their age. For them, legacy is defined less by things like academic accolades and more by things like their advocacy for the disability community, the way they teach others to think differently about communication and relationships, and the small, everyday moments that linger with loved ones.
These moments that connect people are what Boles refers to as 鈥渓iving legacy.鈥� After a decade of research, she and her colleagues have crafted an evidence-based definition that comes directly from the experiences of patients and families.
鈥淟egacy is not a thing. It鈥檚 a compendium of our experiences and our relationships,鈥� Boles said. 鈥淎nd the important thing about supporting families through the grieving process is that you have to start with a patient-centered lens. That finally started to catch on in our field.鈥�
鈥淟egacy is…a compendium of our experiences and our relationships…you have to start with a patient-centered lens.”
Now Boles teaches and models this understanding of legacy. In her Vanderbilt seminar, Death, Grief, and Loss, students design their own legacy projects as part of their final portfolio. They create songs, videos, photo albums, cookbooks and more. One student developed a website with an interactive timeline of his life; another created a trivia game she wanted people to play at her funeral.
Informing the King family legacy
Boles isn鈥檛 the only person interested in the idea of legacy. Her research is featured in the recently published book, , co-authored by Martin Luther King III, Arndrea Waters King, and Marc and Craig Kielburger. In thinking about how to continue his father鈥檚 legacy through his life, King III and his co-authors promote the idea that the small actions people take in their daily lives create legacies that unite people.
A chapter of the book discusses Boles鈥� research and her advice that a more meaningful approach to legacy making could be filming a video that captures shared moments between a dying child and their loved ones. The chapter concludes that 鈥溾�he word 鈥榣iving鈥� in front of 鈥榣egacy鈥� sets an intention to create daily habits that foster connection.鈥�
Expanding the definition of legacy
What does legacy mean for those who feel disconnected from family, friends and society? To expand the definition, Boles is planning a study to understand how the unhoused community in Nashville, Tennessee, thinks about legacy. For people who have few or strained relationships and minimal possessions, the definition may be something else. How can they express their personhood and memories when few physical possessions remain after they die?
鈥淚 think everyone has a legacy,鈥� Boles said. 鈥淜nowing what that means to individuals allows us to better support them and their loved ones.鈥�
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Boles teaches in Peabody鈥檚 , which has a clinical and developmental research track and applied professional track for those interested in becoming certified child life specialists. to learn more.
Boles leads the . A she co-authored with Maile T. Jones, MEd’20, and Elena Albanese, MEd’21, won the .