St. Luke’s is working to ensure that our care is patient-centered. This means putting the patient at the center of all we do and individualizing how we provide our care to meet the needs and wants of our patients.
Recognizing the special needs of adolescents and young adults is part of being patient-centered. And as with so many of the programs and approaches that are called for with a patient-centered approach, many needed and indicated resources are not paid for under the traditional fee-for-service reimbursement model.
But thanks to community support and donations, these young people will receive the extra care and attention that they deserve. I’d also like to offer my special thanks to Hyundai Hope On Wheels for their Impact Grant that makes so much of this possible.
Here to tell you more about what we are doing is St. Luke’s Communications Coordinator Chereen Langrill.
- David C. Pate, M.D., J.D.
St. Luke’s care is among the best in the nation, but keeping patients at the center means constant improvement – and a special concern for patients who might not always have been at the center historically.
St. Luke’s Mountain States Tumor Institute is doing just that. MSTI cares for approximately 300 pediatric oncology and hematology patients each year. Some of those patients are adolescents and young adults (AYA) who fit into a unique category, according to Marni Allen, nurse practitioner for St. Luke’s MSTI Pediatric Clinic.
“They aren’t little kids who require total care and direction, yet they are not independent adults,” Allen said. “Unlike young children, they know what it is to be sick and to miss out on typical life activities. They are caught in the middle.”
St. Luke’s MSTI Pediatrics is moving to fill the gap with the support of a long-time community partner. A $50,000 Hyundai Impact Grant, awarded in August, will help support a new navigator position dedicated to supporting St. Luke’s AYA patients. It will be St. Luke’s first navigator role dedicated to AYA patients. Allen hopes to hire the new AYA navigator in early 2017.
Studies conducted nationally and around the world have shown that AYA patients with cancer have needs that differ significantly from those of younger patients. Young adults and adolescents are in a time of transition in their lives. They are developing their own interests and identities, and they want people to recognize their characteristics.
That significant identity shift, natural as children mature, has been described by the National Institutes of Health and others as “being known.” It refers to seeing someone as an individual and recognizing the characteristics that make them unique. Recognizing and affirming emotional needs, values, beliefs and interests are key for adolescents and young adults.
Kaylee Clark was a 19-year-old student at the College of Southern Idaho in Twin Falls when she was diagnosed with leukemia.
Clark’s entire world changed. She moved back to Boise to live with her parents, and instead of attending classes, started receiving treatment at MSTI’s Laura Moore Cunningham Pediatric Oncology and Hematology Clinic.
Clark, now 21 and still receiving treatment at St. Luke’s MSTI Pediatrics, credits her mother’s support for seeing her through all the challenges of treatment.
“She helped me work through all of those hard things, and she was there for me when I was bummed out about not going to college,” she said.
Friendships fell away, deepening the isolation Clark felt in the first several months following the diagnosis.
“I would almost say it was harder than learning I had cancer,” she said.
Navigators, such as the position MSTI plans, will add another layer of support.
“Our goal is to create an environment where we give and respect the voice of adolescents and young adults in treatment planning and decision-making,” Allen said. “We want to empower them and give them the tools to make successful decisions during the crucial time of therapy.
“Importantly, we want to help them navigate their transitions through survivorship, where they can develop and maintain healthy relationships and integrate their experiences into successful adulthood while being an advocate for their own health.”
Clark considers herself fortunate to have a supportive parent. She also understands the value in working with a patient navigator.
“People treat you different when they find out you’re sick,” Clark said. “Just having someone who is not afraid of that is the biggest blessing in the world.”
The Hyundai Hope On Wheels Impact Grant is awarded from Hyundai Motor America along with support from Bronco Motors in order to help institutions that treat children who have cancer. Through this program over the past decade, Hyundai has awarded more than $300,000 to St. Luke’s Mountain States Tumor Institute’s Pediatric Oncology Clinic.
St. Luke’s Health Foundation welcomes gifts from businesses and individuals. Please consider giving the most meaningful gift you can by making an online donation today or contacting St. Luke's Health Foundation.
St. Luke's Health Foundation
190 E. Bannock St., Boise, ID 83712
(208) 381-2123 / firstname.lastname@example.org
Chereen Langrill is a former communications coordinator for St. Luke’s Health System