We are currently working with UNC Hospitals on three approaches to give adolescent and young adult cancer patients a greater sense of independence, dignity and identity. This work is being carefully evaluated as we expect some approaches to be more successful than others, and based on these evaluations we will shift resources accordingly.
1. Fund the first Adolescent and Young Adult (AYA) Program Director position at UNC to develop age-appropriate programming
Modeled on a successful initiative in the U.K., the AYA program director is building a comprehensive program to provide developmentally appropriate support to adolescent and young adult cancer patients. This program takes a variety of forms, all designed to respond to a patient’s individual needs:
- Offer one-on-one support. Many adolescents and young adult patients spend long periods of time in the hospital alone. The program director 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. The program director arranges for adolescents and young adults to have access to complementary medical approaches that interest them — activities such as massage, yoga, acupuncture and meditation;
- Identify resources. The program director identifies resources specific to this age group such as websites to connect and socialize with other teens and young adults with cancer, directions for creating a blog, and information about a wide variety of age-appropriate community resources;
- Organize events and programming. The program director organizes regular events and programming that promote peer support and healthy adolescent and young adult development. These events are designed specifically for adolescent and young adult cancer patients at UNC — 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 adolescent and young adult cancer patents.
- Ensure patients understand their options for clinical trials. The AYA program director works with patients to ensure they 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 with UNC and other national organizations to conduct research. This research will study the impact that various age-appropriate resources and non-clinical supports have on the adolescent and young adult patient experience.
3. Collaborate with UNC to modify hospital policies to support this age group
Recognizing that adolescent and young adult patients have unique developmental needs, we are working 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;
- Consider ways to co-locate adolescent and young adult cancer patients. Although challenging to consider, there is evidence from the U.K.’s Teenage Cancer Trust that designing an adolescent and young adult “unit” or cluster of rooms has a transforming effect on this age group’s patient experience. Teenagers and young adults consistently report that being able to talk to peers going through what they are going through and not feeling isolated and lonely amid 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.