When Jason Winkle’s son Micah was diagnosed with Ewing sarcoma at age 9 in 2015, everything around the family seemed to shift at once — new information, new decisions, and a rapid immersion into the world of pediatric cancer. What helped Winkle stay grounded in those early days, he recalls, were clinicians who didn’t treat him solely as the parent of a sick child but as a person grappling with life-altering news.

“We had our primary oncologist and a fellow who both took time to listen, to ask how we were doing, and generally be encouraging all while being honest with how our son was doing and what his treatment would look like,” he said. That grounding helped him cope when everything else felt unstable. He also drew strength from a parent mentor and from St. Jude events that allowed Micah to “laugh and smile while having fun.”

Still, Winkle wishes that structured parent-to-parent support, like the hospital’s Caregiver Connect program, had existed during his son’s treatment.

“I think that would have been a big help to feel supported and to support fellow parents, had it been available,” he said. “It’s difficult for friends and family back home to really understand what you’re navigating emotionally, but another cancer parent understands before you even tell them.”

These experiences mirror what a growing body of research has shown: Parents of children with cancer bear an immense psychosocial burden, and many feel their own emotional needs remain overlooked — even in strong hospital programs.

What Research Shows About Parents’ Needs

A recent JAMA Pediatrics research letter explored where parents and clinicians agree and differ on psychosocial priorities in pediatric cancer. Both groups identified three top needs:

• Assessment of psychosocial needs
• Psychosocial support and intervention
• Assessment of financial needs

Beyond this overlap, perspectives diverged. Parents emphasized parental mental health, sibling support, and monitoring neurocognitive deficits. Clinicians, on the other hand, prioritized psychoeducation, anticipatory guidance, and palliative or end-of-life care.

Another study — a mixed-methods survey of 370 parents, 11 siblings, and 60 young survivors — similarly found that families overwhelmingly wanted help managing intense emotions, accepting their feelings toward the diagnosis, and coping with the psychological weight of cancer and its life upheaval. The authors concluded that effective interventions must support emotion regulation and consider the entire family system.

Together, these findings reveal a consistent message: Parents want emotional support, opportunities to connect with peers, and help navigating the distress that permeates the cancer experience. That support, however, is not always easy to deliver.

What Parents Say Helps Most

For parents like Winkle, small acts of acknowledgment carry enormous weight.

“Just asking ‘How are you doing mom/dad?’ goes a long way,” he said. 

He didn’t want false reassurance: “No need to tell us that everything’s gonna be ok because some days it isn’t gonna be ok but just let us know that you’re with us and you’re there for our kids.”

He also emphasized how powerful it was when clinicians understood that even the most engaged parents may be too overwhelmed to absorb complex information.

“Everything feels overwhelming. Every choice seems too big to make,” he said. “Explain things to us multiple times because it might be too much to take in the first time. Ask what questions we might have and even suggest a question sometimes: ‘Some parents feel concerned about this…’ Or ‘Many times parents ask me this…’ That’s helpful.”

While these needs are simple to articulate, clinicians say meeting them is far more complex in practice.

The Early Days: ‘Walking Through a Fog’

At St. Jude Children’s Research Hospital, social workers Clay Culp, DSW, LCSW, and Erica Sirrine, PhD, LCSW, FT, meet nearly every family at the moment of diagnosis. What they often witness is pure cognitive and emotional overload.

“Caregivers often describe feeling like they’re ‘walking through a fog’ in the initial hours, days, and weeks following diagnosis,” said Sirrine, director of Social Work. “All the new terrain can feel very unfamiliar and overwhelming, so caregivers often report feeling extreme fatigue or stress initially.”

The social work team conducts a comprehensive psychosocial assessment to understand each family’s strengths, needs, stressors, and available support. This allows clinicians to tailor interventions such as individual or group counseling, referrals to psychology or child life, or coordination with spiritual care or the school program.

Culp echoed the importance of customized care: “It’s important that we tailor our support to the needs of each family. That’s why we offer a wide range of options for support.”

Survival Mode and Self-Sacrifice

Identifying needs is only part of the challenge. Many parents are simply too buried in responsibilities to articulate what they need or even to accept help.

“To put it simply, they are often in survival mode, getting through one day at a time,” Culp said. Parents spend long days in appointments and tend to their child’s physical and emotional needs around the clock. Many are also managing work responsibilities or caring for other children. “When someone is in that headspace and under that time crunch, it can be hard to want to sit down and talk about how you are feeling.”

Sirrine added that parents often feel pressure — internally or from others — to appear composed. “Some caregivers may even be hesitant to share their own concerns, fears, or struggles,” she said.

Practical circumstances add to the challenge of accessing psychosocial support: One parent may stay home with siblings while the other remains at the hospital, families may be far from their usual mental health providers, and single parents may have no opportunity to step away.

The Multidisciplinary Safety Net — and Its Gaps

At City of Hope, Jeanelle Folbrecht, PhD, chief of psychology in the Department of Supportive Care Medicine, also sees families balancing an overwhelming mix of logistical and emotional challenges.

“The needs of these families can be quite plentiful,” she said. Children may require frequent clinic visits for a year or more, and hospitalizations can be prolonged. Parents often need help managing school issues, sibling care, work disruptions, and financial strain, all while supporting their sick child.

A multidisciplinary team consisting of clinical social workers, child life specialists, activity specialists, and psychologists work to address these needs. But clinicians can only respond to what they see.

“Unfortunately, we can only support what we can see during interactions at the hospital or in the clinic,” Folbrecht said. Many families lack sufficient support outside the hospital and may not know how to ask for help.

She noted that parents often respond more readily when others offer concrete suggestions, such as: “Can I bring you a meal? Can I take the sibling(s) to school? Can I help plan a birthday party?”

A Comprehensive Approach to Psychosocial Support

At Dana-Farber Cancer Institute and Boston Children’s Hospital, both in Boston, Abby Rosenberg, MD, MS, MA, chief of pediatric palliative care and psychosocial oncology, emphasizes that comprehensive psychosocial support must be interprofessional, deeply collaborative, and proactive.

“Our initial and ongoing service includes comprehensive assessments of a family’s prognostic understanding, goals of care, preferred communication strategy, decision-making style, sources of strength and resilience, sources of stress and distress, hopes, values, and corresponding needs in caring for their child,” she said.

Meeting parents’ emotional needs can be remarkably difficult, she said, because “many hospital-based clinicians are there to serve the child. In other words, there may be fewer clinicians focusing solely on the parents’ coping and emotional supports.” Parents referred to community therapists may find them inaccessible, expensive, or impossible to see without leaving their child’s bedside.

Social needs vary widely as well. Some parents have strong networks; others are physically isolated or cut off from their usual support due to hospitalization or relocation for treatment. Concrete needs such as housing, food, time away from work, and transportation add substantial strain.

Despite the challenges, clinicians across institutions highlighted several approaches that are making a meaningful difference for families.

Integrated Psychosocial Teams

At both St. Jude and City of Hope, embedded psychosocial teams work closely with oncology providers, child life specialists, psychologists, spiritual care, and school programs to provide a unified layer of support. This integration ensures that emotional and practical needs are addressed alongside medical care.

“Clinical social workers assist with financial, school, and adjustment needs,” Folbrecht said. Child life specialists offer developmentally appropriate education, while psychology helps families navigate coping, adherence, and behavioral challenges. When teams collaborate well, she added, “they can go a long way” toward meeting families’ needs.

Rosenberg sees similar benefits in her own institution. “Embedded (integrated) psychosocial care is key,” she said. “Integrating palliative care early also helps…Most families who receive palliative care wish they had done so sooner.”

Tailored, Ongoing Assessment

At St. Jude, a universal psychosocial assessment at diagnosis helps clinicians understand each family’s strengths, stressors, and support systems. For families in long-term treatment, monthly caregiver screening tracks emotional well-being, financial stress, and caregiving challenges.

“This helps us make sure we keep up with the concerns of caregivers over time,” Culp said, noting that some parents find it easier to express distress in a survey than during a face-to-face conversation.

Peer and Group Support

Opportunities to connect with other parents emerged as one of the strongest unmet needs in both studies and interviews.

St. Jude offers several options:

• Caregiver Connections groups
• Amentorprogram for one-on-one support
• The Caregivers SHARE podcast, which blends parent stories with expert guidance

Acceptance and Commitment Therapy(ACT) and ‘Micro-Moment’ Interventions

Recognizing that many parents cannot leave their child’s bedside, the St. Jude team often incorporates ACT principles in short, flexible ways.

“A counseling session with a social worker won’t make their child’s diagnosis go away,” Culp said. “But maybe it can help them find ways to carry all the difficult thoughts and emotions in a different way…even mini-moments, or micro-moments, that can nudge parents in that direction.” This might include a 5-minute self-compassion exercise at the bedside.

The Universal Weight of Financial Stress

Financial pressure is one of the few areas where parents and clinicians strongly agree on priority.

Both the JAMA Pediatrics research letter and all four clinician interviews with Medscape Medical News underscored the financial strain created by pediatric cancer. Parents often reduce work hours or leave jobs entirely to support their child, while some must temporarily relocate for care.

“Financial stressors are very common when a child is in treatment,” Sirrine said. Families may struggle without employer compensation, and relocation only magnifies challenges.

St. Jude and City of Hope both routinely screen for financial resource strain, with social workers and patient assistance coordinators offering:

• Thorough assessments
• Referrals to external foundations
• Help with rent or mortgage payments
• Access to diagnosis-specific assistance

But these resources, while helpful, rarely erase the burden entirely. As Folbrecht noted, “Even with this, the financial impact on families can be quite difficult.”

Across institutions, clinicians identified several improvements that could strengthen psychosocial support for parents. These include:

• Normalizing asking about parents’ needs
• Integrating psychosocial and palliative care early
• Building family-centered interventions
• Offering flexible, brief interventions
• Creating more peer support opportunities

What Parents Remember Most

Years after Micah’s diagnosis and treatment, Winkle still remembers the clinicians who looked him in the eye and asked how he was doing. He remembers how it felt to be supported by someone who “understood everything happening to our son.”

For him, and for many parents, psychosocial support was not optional. It was what sustained them.

“Some days we feel all alone,” he said. “Hearing that you’re with us might be what we need to keep moving that day.”

For pediatric oncology teams, the message is clear. Treating the child is only part of the work. Supporting the parents — emotionally, practically, financially, and relationally — is not just compassionate care. It is essential care.

Rosenberg reported no relevant financial disclosures. Folbrecht has no disclosures.