By William K. Alcorn
Akron Children’s Hospital is expanding its pediatric palliative-care program into the Mahoning Valley to enable families of children with complex or chronic health conditions in Mahoning, Trumbull and Columbiana counties to have access to services closer to home.
The program, to be located on Akron Children’s Hospital Mahoning Valley’s Beeghly Campus on Market Street, is expected to be operational by the first quarter of 2016, said Dr. Sarah Friebert, director of pediatric palliative care at Akron Children’s.
“We’ve always served patients in the Mahoning Valley through our Haslinger Family Pediatric Palliative Care Center in Akron, both at the center and through home visits,” Dr. Friebert said.
“As Akron Children’s presence in the Mahoning Valley has grown, so has the need for our program. It’s much easier to care for our patients and their families when we’re in their own neigborhood,” she said.
Founded by Dr. Friebert in 2002, Akron Children’s pediatric palliative-care program works with children and their families to enhance quality of life and minimize suffering for patients with serious illnesses.
Pediatric palliative care focuses on children, prenatal to young adult, with complex, chronic or serious conditions and their families, enhancing quality of life in partnership with cure-directed care, according to Akron Children’s website.
Palliative-care patients receive comprehensive, interdisciplinary care to control pain and other symptoms. Care is customized for each patient and family.
Akron Children’s specialized team of pediatric palliative-care providers includes physicians, nurse case managers, social workers, a bereavement coordinator, a chaplain, child life specialists, therapists, psychologists, pharmacists, a dietitian and trained volunteers.
The team works in collaboration with the child’s other health care providers and specialists, helping to provide seamless care coordination and communication, and aiding parents in making informed choices about difficult medical decisions, Dr. Friebert said.
“We are in the process of hiring a palliative-care team for Akron Children’s Mahoning Valley, starting with a nurse practitioner later this year or early in 2016,” she said.
The nurse practitioner, a key person in forming a team, will see patients in the hospital at Beeghly Campus, in the neonatal intensive care unit at St. Elizabeth Boardman Hospital, and make home visits, said Dr. Friebert, who will also be at Akron Children’s Mahoning Valley two days a week.
Over the next four years, 3.7 full-time equivalent employees will be hired, based on funding, most of which comes from donations, and patient needs, Dr. Friebert said.
She explained the need for palliative care.
“When children face a chronic condition or complex illness, life becomes a roller-coaster ride for them and their families. We walk alongside the family to try to ease the burden on that journey,” she said.
Local families like the Dapriles, of Canfield, say they are looking forward to having palliative-care services closer to home.
Seven years ago, their son Nathan, 9, who was born with a genetic disorder, experienced a near-death emergency after surgery. The palliative-care team became a permanent part of Nathan’s care from that point forward, said Amy Daprile, Nathan’s mother.
“We had no idea of the depth of services the palliative-care program provides. They guided us every step of the way, from emotional support and financial counseling to preparing us to care for Nathan at home. It will be wonderful to have the program in the Mahoning Valley where they can reach more local families more efficiently,” said Daprile, a teacher in Boardman schools.
“We refer to what we do as an extra layer of support to help families and their children with suffering, sometimes physical, sometimes emotional and psychological or spiritual,” Dr. Friebert said.
“We’ve had families who have been afraid when told about us and what we do until they understand what it is. It’s the kind of care you’d want for your child,” she said.
“The people of the Mahoning Valley have such strength, character and a sense of community. We’re proud that we can now be a larger part of that,” Dr. Friebert said.