“A child needs to be able to have permission to be able to talk about what’s going on in their bodies and a place to share their fears. And their parents need help having these courageous conversations with their children, including going on without them,” says Dr. Lori Wiener on the needs of critically ill children. Dr. Wiener is a staff scientist in the Center for Cancer Research Pediatric Oncology Branch and provides psychosocial support services to pediatric patients, and their families, coping with serious illness. She brings her psychosocial expertise and behavioral research experience to the MyPART Team.
Dr. Wiener’s time is split evenly between clinical work and research, what she describes as “a truly wonderful marriage. What I learn from our patients and families really helps me to design the questions and the studies needed to address their needs, especially in areas that have not been addressed previously.” Dr. Wiener listens to the psychosocial needs of families and provides clinical interventions that range from family counseling services, helping children with their adjustment back to school, management of pain and anxiety, and more. She works to find evidence-based solutions and connect families with the resources they need.
One of the needs Dr. Wiener identified through her research is to facilitate conversations about death between a child who may be dying and their parents. In one of many studies she has published on meeting the needs of pediatric patients and their families, data show that only 40% of parents felt prepared to handle their child’s medical and emotional needs at the end of life, and most parents wanted help. The data her team have collected show that many parents have regrets or report unfinished business after the death of their child and these parents have higher rates of distress. Unfinished business is often about not having certain conversations with their child.
To fill this gap, Dr. Wiener and her colleague, Dr. Meaghann Weaver, a pediatric oncology fellow specializing in palliative care, wrote a children’s book entitled The Gift of Gerbert’s Feathers about a brave gosling who reflects on his future knowing the time will come when he won’t be able to make the journey of migration with his fellow geese. Gerbert courageously finds a way to show his family and friends that he’ll always be with them. The inspiration for Gerbert came in part from a walk Dr. Wiener took with her husband years ago. They heard a loud noise and looked up to see a flock of geese migrating overhead. Dr. Wiener, an avid photographer, described the sight as breathtaking and tried to capture a photo of the sight and returns each year to try and capture the migration. She explained the family-oriented nature of geese: “When one is down another stays with it until it gets better or dies.” The concept of having an animal as the main character for the book spoke to her and Dr. Weaver.
The book serves as “a tool to introduce communication about death and dying for children and address[es] the gap that exists in current children’s literature to effectively enable children to reflect on their own dying process,” Dr. Wiener says. She refers to this as “bibliotherapy,” using books as therapy, and explains, “it’s a safer way to address issues in a way that’s non-threatening. Through the creation of a safe distance, books can facilitate a child’s understanding…and [can] bring them to the edge of sensitive issues that may be perceived as threatening.”
Before writing the book, Dr. Wiener and her team performed a comprehensive review of children’s literature looking for books that could be helpful to children who may not survive their own disease. In the 210 books they identified that met their search criteria, only five were about the experience of a child dying. Most of the books featured animals as the main characters and incorporated spiritual elements and metaphors. Less than 25% of the books they found included tools to help readers address the topics of death, dying, and bereavement and start conversations between a family member and child. Dr. Wiener has published these results, which in part led to the effort to create The Gift of Gerbert’s Feathers. The proceeds from sales of the book go directly towards pediatric hospice and pediatric palliative care.
In the future, Dr. Wiener would like to create an audio version of the book, so that children and their parents can listen together. In addition to children and their families, Dr. Wiener highlights that the book is applicable to many others, including siblings, palliative care providers, pediatricians, teachers, religious leaders, school counselors, and more, to foster conversations about death, dying, and bereavement with a “supportive and gentle approach.”
Read more about Dr. Wiener’s work and how her evidence-based behavioral interventions benefit not only MyPART, but all pediatric patients experiencing a serious illness.
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