Editor's note:The 2019 AAP National Conference & Exhibition will take place from Oct. 25-29 in New Orleans.
When a child is diagnosed with cancer, siblings may get lost in the shuffle.
Melissa A. Alderfer, Ph.D., is hoping to change that.
A clinical psychologist, Dr. Alderfer has spent most of her career conducting translational psychosocial research and providing psychosocial care to children with cancer and their families. Part of her work has focused on how childhood cancer impacts siblings.
She aims to bring the sibling experience to the forefront during a session titled “Family Ties: Meeting the Needs of Siblings of Children With Chronic Illness” (I4051) from 8:30-10 a.m. Monday, Oct. 28 in room 294 of the convention center.
“I will be talking about family-centered care and how within pediatrics, we have settled for patient-parent-centered care,” said Dr. Alderfer, principal research scientist at the Center for Healthcare Delivery Science, Nemours Children’s Health System. “I will be talking about the role of siblings within families, how childhood chronic conditions impact siblings and first steps in moving toward true family-centered care.”
Dr. Alderfer noted that a recent survey of pediatric residents, led by David Buchbinder, M.D., of Children’s Hospital of Orange County and University of California at Irvine, suggests that residents have not received any formal training regarding sibling issues.
“This (presentation) is a first step in remedying that gap,” she said.
Early in her career, Dr. Alderfer was involved in a study evaluating a family-based intervention for adolescent survivors of childhood cancer. The program included a day-long workshop during which family members, including teenage siblings, were given 10 minutes to talk about how cancer impacted them.
“The stories that the siblings told were simultaneously heart-wrenching and inspiring,” Dr. Alderfer said.
They talked about feeling neglected, sad, scared, angry, guilty and alone, and how they lost their routines and their parents’ attention. Yet, they wanted to help their families and not be a burden.
“Many showed great strength and resilience while also suffering alone,” Dr. Alderfer said. “I hope my work helps bring attention to the needs of these kids and helps them feel as if they still belong.”
For more coverage of the 2019 AAP National Conference & Exhibition, visit http://bit.ly/AAPNationalConference19.