Why AYA Oncology Matters

William was 18 when first-line therapy failed, and his care was transferred to our institution. Along with him came a distrust for medical professionals, a lack of understanding how to navigate medical and insurance systems, issues with transportation, limited support from family, financial strain, all on top of the “normal life stuff” of an 18-year-old.

Adolescents and young adults (ages 15-39) experience cancer differently than children and older adults. Cancer interrupts development and self-discovery, and impacts fertility, finances, relationships, careers, and education, all of which are crucial during the AYA age range. Those with incurable disease are faced with end-of-life decisions just when life is starting to feel like their own, and those that survive may have decades of survivorship, including the physical, financial, and emotional sequelae, to navigate.

The Role of Oncology Social Workers in AYA Care

Oncology social workers are uniquely positioned to identify and assess AYA’s strengths and challenges, and to partner with our healthcare institutions, our AYA patients, their partners, parents, and others in their circle to remove barriers and improve their overall care.

During our time with William, we identified cancer and age-specific barriers, provided resources where we could, and built authentic relationships with William and his mom. We gained their trust and compliance and outcomes improved. He went from disengagement to sharing his interests and dreams. We couldn’t change his home and economic situation, but we could get to know him and support him individually.

Practical Ways to Improve AYA Care at Any Institution

Become AYA-aware. Know the statistics. Know what makes them unique. Know how your institution does (and doesn’t) support AYAs. Identify and share resources. Find interested colleagues – AYAs benefit from solid multidisciplinary partnership and care. Chances are someone will be interested; they may just not know it yet!

Don’t reinvent the wheel! There are numerous AYA oncology programs in the U.S. and beyond, and if oncology social work is a small world, then AYA oncology social work is even smaller. As I started exploring how to better care for AYAs like William, I cold called and emailed many unsuspecting AYA program managers and social workers who were willing to share their knowledge and experience. The AYA oncology community is packed with passionate clinicians and administrators who have challenged oncology care norms to better understand and address the unique experience of AYAs.

Join the AYA Special Interest Group! Alexandra Russo and I are the AYA SIG Leaders and would love to connect with you. We host occasional virtual meetups and are working on updating our resources on the AOSW website. We love to talk about AYA care and programming, so reach out to us!

William completed his care years before my institution created an official AYA cancer program, but that didn’t prevent me from improving my individual practice and learning from every AYA patient I met during that time.

Building and Expanding AYA Programs

It took seven years of ongoing, often frustrating, effort to build the scaffolding for our AYA program. Two and a half years since becoming “official” and we are still building and remodeling. Growing pains are a good thing, but they are real!

If you are building an AYA program from the ground up, a few words of advice:

• Get physician and other administrative support. Social work voices are loud, but healthcare systems somehow often hear physician voices more clearly.
• Collecting data (best you can) is important. Acknowledge the disparities in AYA oncology care at your institution with a needs assessment, patient feedback, and your own observations.
• Look for funding opportunities. Grants from within and outside your organization can help with the cost of activities and can sometimes walk you through program development, how to get leadership buy-in, and even provide funding for positions.
• Whether you’re building a program or have had one for decades, include your AYA patients in planning whenever possible. It could be an informal handful of phone calls with patients you know, or a formal patient advisory council. However you do it, get their thoughts. We adapted the patient motto “nothing about us without us” to “nothing about you without you.” There’s nothing like an AYA telling you your idea sucks to keep you humble and to ensure your programming, big or small, is something they will show up to.

William was part of our initial AYA focus group and then the subsequent support group that formed. His participation boosted his confidence, compliance, and connected him with other young adults who understood him in a way his family and healthcare team could not.

Opportunities for Social Workers

You may or may not have an AYA cancer program. You may or may not get institutional/organizational support. You may or may not be interested in this patient population, and that’s okay!

Regardless of these things, I bet you do have oncology social worker grit. The grit that moves you to understand, advocate, and meet your patients where they are, even when that brushes up against institutional norms. And if you don’t have it? Borrow some from your AOSW colleagues who wrote articles for this issue, or those you’ll meet at conference, or your friendly AYA and other SIG leaders.

William didn’t know I was frustrated that I felt like my advocacy was moving at a glacial pace. He didn’t know the number of times I was told “no” or “not now.” He was unaware of the times I reframed how staff labeled him– “non-compliant” and “difficult” – by addressing that his life experience, health literacy, and needs were completely different to our 65- and 75-year-old patients. But what he did know was that members of his care team saw him, an 18-year-old who missed his senior year of high school, who won’t be able to have children, who all of a sudden had to help with medical and household bills, who was faced with figuring out how to apply for a job while not knowing if he would survive, and as someone who needed to connect with other young people who “just got it.” I believe that made the difference in getting William through treatment.

As social workers, we are charged with not only advocating for our individual patients but also for their places within our institutions. So, whether your oncology social work passion leans to survivorship or palliative care, geriatrics, pediatrics, or AYA care like me, lean into that passion and expertise with each patient interaction and in moments of larger advocacy and leadership.