Bridging the gap: Psychological support for teens and emerging adults with cancer

Children undergo numerous developmental changes as they age, but the ages of 15 through 29 are a particular rollercoaster of personal and social milestones that help define their identity and establish independence. When a teen or emerging adult is diagnosed with cancer or another catastrophic disease, reaching these milestones can be derailed.

A cancer diagnosis is frightening and disruptive for any individual at any point in their life. However, dealing with cancer can be especially difficult for teens and emerging adults due to potentially missed social and personal growth. Psychosocial support, which includes educational, emotional, psychological, social and spiritual support, can help these patients — but access to such services, as well as support from family and community, is not universal. For some teens and emerging adults, a health care gap exists when it comes to psychological and psychosocial support. This issue can be impacted by barriers such as cost and other socioeconomic factors, transportation to appointments, work or school time constraints and more. 

At St. Jude, incorporating psychological and psychosocial care, such as one-on-one therapy, educational support from school advocacy coordinators, counseling with a licensed chaplain or sessions with staff members from the Transition Oncology Program, into every patient’s experience is a key part of treating teens and emerging adults with cancer. 

“Cancer can be intrusive to important social relationships for teens and emerging adults. It may impact peer relationships, romantic relationships, activities associated with school — all those things that are important during the teenage and young adult years, including identity formation — and cancer may disrupt all of that,” said Rachel Tillery Webster, PhD, Department of Psychology and Biobehavioral Sciences.

Because of their unique life stage, a more tailored approach to psychological and psychosocial care during and after treatment is an important aspect of caring for teens and emerging adults with cancer. A better understanding of exactly what support this age group wants and needs and clarity about how to best deliver and provide assistance may benefit more teens and emerging adults. At St. Jude, researchers are studying what works best to support this age group. 

Advocating for agency

People tend to have a stock image in their minds of what a pediatric or an adult hospital looks and feels like. The pediatric hospital convention probably includes cuddly animal or balloon décor rendered in primary colors. In contrast, the adult hospital is swathed in various neutral shades, with the occasional serene watercolor painting or inspirational quote framed on the waiting room wall. The contrast between these two images is stark; each clearly caters to the expected type of patients. But where do teens and emerging adults fit in?

Depending on where they live and what is available, a patient in this age group may be treated for cancer in either a pediatric or an adult hospital. While their physical environment is not the most important aspect of their care, it can become emblematic of their emotional experience: feeling too old or too young and not having their experiences during such a pivotal time in their life be considered in the context of their treatment.

One of the core components of development for teens and emerging adults is asserting their independence and gaining autonomy from their parents or guardians over aspects of their lives. A cancer diagnosis can stymie that progression and lead to frustration, especially if the patient feels infantilized by their care team and loved ones. 

This makes it imperative to meet these patients where they are socially and emotionally. One crucial way to do so is to enable patients who are teens or emerging adults to advocate for themselves and have agency regarding their care. This involves members of their care team speaking with them about their treatment, not just with their guardian or other care provider, and encouraging them to voice their input regarding those next steps. 

Encouraging patients who are teens or young adults to feel comfortable advocating for themselves while undergoing treatment at St. Jude also benefits them when they return to their home environment: They feel more comfortable doing so with their new care team. For example, suppose a patient has undergone chemotherapy that might impact their lungs later in life, and they visit their primary care provider for a cough during flu season. In that case, they might make a point to remind their doctor that they have a complicated medical history and they want to avoid making assumptions about what is causing the cough.

“We want to ensure they’re knowledgeable about their history and treatment,” explained Emily Browne, DNP, APN, RN, St. Jude Transition Oncology Program director, “and that they feel comfortable standing up and speaking about them.”

Proactive psychological support

Ensuring all patients receive the psychosocial support they need is paramount at St. Jude. Previously, psychological services were offered as consultations, allowing patients and their families to be seen if and when issues arose. However, the hospital has since integrated psychological care into patients’ treatment plans. As a result, providers can take a more proactive approach to psychological care for their patients.

“Typically, psychology involvement was more reactive in nature; we were seeing patients for identified concerns,” explained Elyse Heidelberg, PsyD, Department of Psychology and Biobehavioral Sciences. “This greater integration has allowed us to get involved sooner, with the hope of providing early interventions and, perhaps, even preventing some of those problems we were seeing arise down the line.”

The process begins with a set of assessments for patients and their families, guided by the Pediatric Psychosocial Preventative Health Model (PPPHM), designed to understand how they are coping and determine what support they might need. Universally, patients and their families are offered psychoeducation, anticipatory guidance and family-centered support throughout their treatment. Depending on the results of the assessments, patients may require more targeted, tailored support. 

And just like a certain dosage of medicine is not appropriate for a 7-year-old compared to a teenager, psychological support at St. Jude also accounts for what is developmentally appropriate for a patient’s age.

“Clinicians are typically providing care to younger patients, so that’s often the lens through which many clinicians interact with patients. At the same time, there is a need to keep the unique developmental needs of teens and emerging adult patients front of mind when providing medical and psychosocial care because it is quite different from providing care to the younger pediatric population,” said Heidelberg. “I think that’s what our champions and advocates are great for throughout the hospital: bringing that piece to the forefront when we’re talking about how we provide developmentally appropriate care to this age group.”

That developmentally appropriate care takes many forms, depending on the individual’s needs. It can include providing special spaces away from younger patients and parents or other caregivers where they can interact freely with peers. It can include giving the patient greater agency in their treatment plan instead of filtering information through a caregiver. Perhaps most notably, the care team provides their patients and the patients’ families with the tools to navigate the health care systems in their home environments once they transition out of St. Jude.

The transition from treatment to home is both exciting and overwhelming, especially for teens and emerging adults. The St. Jude Transition Oncology Program helps survivors, including adolescents and emerging adults, navigate how to find appropriate medical and psychological service providers, understand their insurance coverage, return to work or school and much more once they have returned home. The goal is to help patients advocate for themselves but also support them throughout the entire transition.

“The program focuses on three major transitions. The first is the on-therapy to off-therapy transition, which is a time when patients and families have a lot of questions as they figure out what the ‘new normal’ after cancer therapy is,” said Browne. “Regarding psychosocial and medical services, we do everything we can to make that transition as seamless as possible.

“The next big transition is to long-term survivorship,” Browne continued, “There can be a lot of anxiety and stress with this because it involves so much newness, but we want to ensure patients understand the importance of continuing that long-term follow-up care. Finally, we focus on supporting our adolescents and emerging adults as they transition to adult health care providers or an adult health care model. We recognize that our patients aren’t necessarily transitioning their oncology follow-up to an adult oncologist at the time. However, we want to ensure we’re preparing them for that eventual transition — if needed — and also ensure they’re aware of those self-management skills they’ll need to succeed in the adult arena.”

Since this program has been available, providers have received promising feedback from patients and their families. 

“We’ve been able to show that when we have transition appointments and education sessions with families and provide them with these tools, they feel like they can navigate the support better,” said Webster. “We see decreased stress for caregivers when they’re receiving this support; they report that they’re better able to navigate the next steps.”

Challenging circumstances beyond the clinic

Although the Transition Oncology Program exists at St. Jude, there are still barriers preventing patients from accessing psychological and psychosocial support in their communities — and the impact of these barriers is more acutely felt by those not treated at St. Jude who have not had the guidance of such a program. These barriers can be attributed to several different social and structural sources and can lead to adverse downstream health effects.

In recent years, the taboo associated with needing psychological services has abated somewhat, especially in younger generations. However, for many people, the stigma persists, making it difficult to obtain the support one might need after undergoing cancer treatment. For many providers, including providers at St. Jude, helping patients unlearn that stigma can present a real challenge. Patient and family education about psychological services coupled with empathy and understanding about the challenges the family is facing can go a long way to removing those negative connotations, but only if patients have access to such education.

A lack of trust in the patients’ local health care environment can also create barriers to continued care, making it harder for them to advocate for themselves. For Browne, this presents a tricky balancing act. It’s important not to make snap judgments about a provider, but she also recognizes that trust is essential in all facets of care. 

“If you’re uncomfortable and you don’t feel like they’re addressing your concerns and answering your questions, then you’re not going to speak up and advocate for yourself,” said Browne. “I encourage people not to base everything on the first visit; give it a couple of visits before you decide to change providers.”

Another barrier between patients and psychosocial care is how accessible such care is for them in their home environment. Survivors living in rural settings might not have mental health care providers in their area. Available providers in both rural and urban settings might have exceptionally long waitlists, prolonging the time patients go without care. Patients, especially teens and emerging adults, who have undergone cancer treatment may be struggling to readjust and cope, and finding a provider who understands those needs as they relate to cancer can be challenging. Insurance coverage can vary wildly, making obtaining the necessary help cost-prohibitive.

Because of these barriers, some patients who are teens or emerging adults may seek out risky coping strategies for stress management, such as vaping. While risk-taking behaviors are not uncommon within this age demographic, vaping and other substance use have increased in recent years, and teen and emerging adult survivors are just as likely to engage in such behaviors as their counterparts despite the usual risks of worsening negative health effects and those unique to being a cancer survivor. For Webster and her colleagues, this becomes a two-part challenge: first, identifying risk factors for patients engaging in substance use, and second, how to support local providers in helping their patients quit.

“We’re trying to find unique ways to connect with our patients and have these conversations with them without making them feel judged. But we also want to connect them to the resources they need to control some of this risk later,” said Webster. 

Breaking barriers for a better future

While there are still disparities in terms of teen and emerging adult psychosocial care, experts such as Browne, Heidelberg and Webster, along with their colleagues in psychology and oncology nationwide, are committed to improving protocols to ensure each patient receives the support they need. Research into improving such care during and after treatment is ongoing, with the patients’ futures always at the forefront.

Transitioning from on-therapy to off-therapy can be exciting, but it can also be overwhelming, especially for teens and emerging adults who are preparing to take on new milestones. The goal of psychological and psychosocial support is to set these patients up for success, so they can have the life they want and know how to live it.

Editors Note: The late Victoria Willard, PhD, Department of Psychology and Biobehavioral Sciences, provided background for this article. Her research and insights about teen and emerging adult psychological care proved invaluable to this piece.