Meeting the needs of young people with cancer

By Mayo Clinic staff

Social work — and specifically medical social work — is more than a job or career for Melody Griffith. It's a calling, she says.

Griffith, who has been at Mayo Clinic in Arizona since 2016, works with adolescents and young adults with cancer. She helped establish a program in Arizona dedicated to understanding and addressing what is important to these adolescents and young adults — achieving important life milestones, fertility preservation, peer support, concerns about survivorship, and more.

The interest in adolescent and young adult cancer care in Arizona has inspired Mayo Clinic Comprehensive Cancer Center to endorse an enterprise-wide Adolescent and Young Adult Cancer Program.

Griffith also created a monthly peer support group to address the needs of young people with cancer. And she is the principal investigator on an interventional clinical trial titled "Group Curriculum for Improving Survivorship Outcomes in Adolescent and Young Adult Cancer Survivors" — the first National Cancer Institute trial at Mayo Clinic dedicated to adult and young adult cancer survivors.

The Mayo Clinic Comprehensive Cancer Center Blog team caught up with Griffith to learn more about her inspiration for her work, how the Adolescent and Young Adult Cancer Program came to be and how it is helping patients.

Tell us about your background and what drew you to social work.

A good friend had a roommate who was studying social work. When I was gathering information about potential career paths, I spoke with her about it. I learned that social work has many branches and opportunities for various interests. I originally wanted to be an adoption social worker, but fate and good fortune placed medical social work and then oncology social work in my path. I've been an oncology social worker for 14 years now and feel that it's not just a job or career — it is a calling.

What did you observe happening among adolescents and young adults with cancer that inspired you to start a program specifically for them?

I started working at Mayo Clinic in Arizona in 2016. One of the healthcare professionals I was assigned to — Dr. Allison Rosenthal — had a special interest in young adults and saw quite a few in her lymphoma clinic. We were seeing more and more young patients. Yet there were no specific resources or support available to them at Mayo.

In partnering with Dr. Rosenthal and in caring for our patients, I learned that adolescents and young adults with cancer have needs that differ from young children and older adults, including work and school issues, navigating the healthcare system, relationships, finances, insurance coverage, long-term survivorship and grief and loss associated with having a poor prognosis. The needs were there and obvious, but we hadn't been looking for them.

To decide what to do, in July 2017, we gathered a group of young adults to form a focus group. We met with the group to discuss ways we could provide support. They formed two goals:

• To create a community of adolescents and young adults with cancer, so that no adolescent or young adult felt like they were alone in the process.
• To raise awareness that cancer happens in this age group, and it affects them differently.

From there, we started a support group for our patients ages 18–39 who have or have had a cancer diagnosis. It has been meeting monthly since then and has opened a group to young adults outside of Mayo Clinic.

It was 100% virtual during COVID-19, and we had people from as far west as Hawaii and as far east as Maryland join the group.  

In 2021, a colleague and I were awarded a grant through the Mayo Clinic Values Committee to conduct a study, "Determining the Impact of a Curriculum for a Cancer Survivorship Group for Adolescents and Young Adults." This was the first Mayo Clinic social work-led and first-ever Mayo Clinic adolescent and young adult cancer-focused study listed with the National Institutes of Health. We continue this research with additional cohorts and hope to eventually share the curriculum content with other Mayo sites, other cancer disease groups, and potentially outside of Mayo Clinic.

Dr. Rosenthal has been the physician face of the program and has advocated for Mayo to start an enterprise-wide Adolescent and Young Adult Cancer Program, where she is now the program director.

We joined with stakeholders in Rochester, Minnesota, including Dr. Wendy Allen-Rhoades, co-director of our Adolescent and Young Adult Cancer Program, and others in Jacksonville, Florida, to create a business plan.

We currently have an enterprise program manager (housed in Arizona), a part-time nurse navigator, a patient navigator, and me — the oncology social worker.

We are continuing to grow the program offerings based on input from our Adolescent and Young Adult Patient Advisory Council.

What are some positive outcomes of the program — what difference has it made for adolescents and young adults with cancer?

Patients share that having a place and time where they can connect with other people their age who have had similar experiences makes a world of difference in their experience with cancer and cancer survivorship. They also describe adolescent and young adult programming as validating, empowering, and helping them feel seen and understood with resources that make sense at this particular stage in their lives.

Can you tell us about the Patient Advisory Council and other efforts underway to help adolescents and young adults with cancer?

It's actually the first Mayo Clinic Adolescent and Young Adult Patient Advisory Council. We invited adolescents and young adults who are at various points in their cancer treatment — newly diagnosed, in treatment, metastatic, and post-treatment — to participate in this council. Having their direct input is imperative to building a program that addresses their actual and specific needs as young people with cancer. We are giving them a voice to share their experience and programming preferences. They serve on the council for one to two years, and we meet bi-monthly to identify gaps in care and work on projects to build awareness of the cancer experience of adolescents and young adults at Mayo Clinic in Arizona.

What advice do you have for others who are considering taking on something similar in their area?

Having a pulse on what matters to the population you are hoping to serve is critical. If you don't know them personally or their overall struggles and successes — the "what makes them tick" — then you won't know how to best care for them. Patients know when you are interested and invested in them. It shows in your passion and how you show up day in and day out.

Learn whatever you can about that patient population or that missing piece of care or resources. Reach out to experts in the field. I have had so many mentors in adolescent and young adult cancer over the years. They continue to be relationships that help fuel my fire whenever I feel discouraged or need reminding of why we do this work.

Healthcare is a small world, and it really benefits everyone to have strong connections with other like-minded professionals. Once you know what you want to do, take a step in the direction of doing something, anything. It can be a tiny step. It's taken us seven years to go from knowing we needed to do something more for adolescents and young adults to having staff in place to make those ideas a reality.

Lastly, know that whatever you are doing is probably making an impact somewhere. Whether you ever hear about it or not, the little things you do to effect change do matter. You may not see the results for years or at all, but I guarantee a ripple effect is happening somewhere.

What inspires you to come to work every day?

My patients. I am fortunate to have a role where I get to sit with patients. In the joy. In the despair. In the hope. In the hopelessness. In the silly. In the serious. I have learned more from them and been challenged more by them than I would have ever thought possible. They share so openly and trust me to hold a place in their experience, and for that, I am humbled and truly grateful.

Learn more

Learn more about adolescents and young adults with cancer.

Join the Adolescent and Young Adult (AYA) Cancer Support Group on Mayo Clinic Connect, an online community moderated by Mayo Clinic for patients and caregivers.

Join Mayo Clinic's online Young Adult Cancer Support Group based in Arizona.

Read more stories from adolescent and young adult cancer patients and cancer experts at Mayo Clinic.

A version of this article was originally published on Mayo Clinic's In the Loop blog.