The Be Loud! Sophie Foundation
We partner with UNC’s Lineberger Comprehensive Cancer Center on three approaches to give adolescents and young adults (AYAs) living with cancer a greater sense of independence, dignity and identity. As part of this partnership, the Be Loud! Sophie Foundation funds the first AYA program director at UNC, which is also one of the first in the nation. Lauren Lux, a Licensed Clinical Social Worker, is the director of this program and leads the following efforts:
1. DEVELOP AGE-APPROPRIATE PROGRAMMING
With colleagues from across the hospital, Lauren is building a comprehensive program to provide developmentally appropriate support to adolescents and young adults living with cancer. This program takes a variety of forms, all designed to respond to a patient’s individual needs:
Offer one-on-one support. Many AYAs are alone in the hospital for long periods of time. Lauren spends time with patients during such stays and in the outpatient clinic, developing relationships with them, talking with them about anything that’s on their mind, joining them in activities they enjoy (e.g., walking, visiting the Teen Center, watching movies, playing pool) all in an effort to help maintain their sense of independence, dignity and identity;
Provide access to complementary medical approaches. Lauren arranges for AYAs to have access to complementary medical approaches that interest them — activities such as massage, yoga, acupuncture and meditation;
Identify resources. Lauren identifies resources specific to this age group such as websites to connect with other AYAs, directions for creating a blog, and information about a wide variety of age-appropriate community resources;
Organize events and programming. Lauren organizes regular events and programming that promote peer support and healthy adolescent and young adult development. She designs them specifically for this age group and tailors them to meet individual needs and interests — for a dancer, this might mean a modified dance class in the hospital; for a musician, it can be regularly connecting with a college student who plays the same instrument; and for an athlete, it can be visits and personalized training opportunities with UNC student athletes;
Offer services to caregivers and siblings. If family members are given the physical and emotional support they need, they can in turn support their adolescent and young adult relatives with more energy and attention.
2. SUPPORT AND DEVELOP RESEARCH EFFORTS
The oncology world is becoming more and more focused on medical and psychosocial outcomes of adolescents and young adults and UNC is at the forefront of this effort. Lauren works with clinicians and researchers to:
Ensure patients understand their options for clinical trials. Lauren partners with a variety of staff to ensure that patients are aware of their options to join in clinical trial research. Each new patient receives resources about clinical trials in order to be able to make informed decisions about their care;
Collaborate across UNC and with national and international organizations to conduct research. This research studies the impact that various age-appropriate resources and non-clinical supports have on the adolescent and young adult patient experience.
3. MODIFY HOSPITAL POLICIES TO SUPPORT THIS AGE GROUP
Recognizing that adolescents and young adults have unique developmental needs, Lauren and Be Loud! work with UNC Hospitals to modify policies in the following areas:
Give independence. Wherever possible, give adolescents and young adults more freedom to move around the hospital as well as information about places that they might enjoy such as the Teen Center, the Starbucks patio, the labyrinth, and the chapels;
Maintain privacy wherever possible. Minimize disruptions during the day, allow adolescents and young adults to opt out of supports that don’t meet their needs, block out time during the day when only nurses and doctors can enter, and install privacy screens within hospital rooms;
Provide options for room decor. Attend to the unique needs of adolescents and young adults by allowing them to modify their room to fit their taste and interests wherever possible. Funds are available to maintain a supply of age-appropriate decor—lamps, posters, bedspreads, and other decorative elements. In most cases, patients are able to keep the items;
Increase interactions. Adolescents and young adults consistently report that having unstructured interactions with peers going through what they are going through and not feeling isolated and lonely amid much younger or older patients makes a huge difference in their treatment experience;
Fund training for healthcare providers. The program funds hospital staff to attend workshops and other training opportunities in complementary approaches such as restorative yoga, massage and meditation.