The Other Side of the Diagnosis: Redefining Mental Health Care for Children with Cancer

Author: Emma Sheridan

September, 2025

Pediatric cancer is more than a medical crisis, it’s a life-altering event that impacts not only the patient, but their entire family. This paper explores the connection between limited access to comprehensive mental health care and the long-term emotional, cognitive, and financial consequences experienced by pediatric cancer patients and their support systems. Current healthcare models often prioritize disease treatment while neglecting the psychological and social toll of the experience, despite growing research showing how critical those factors are to long-term outcomes (Barakat et al., 1997; Nathan et al., 2018). Families face multiple barriers to care, including a shortage of pediatric mental health providers, particularly in rural or underserved areas (Modi et al., 2022; Liu et al., 2023), as well as the overwhelming financial burden of treatment (Pinky Swear Foundation, n.d.). Cultural stigma around both cancer and mental illness often makes it even harder for families to ask for help, especially in communities where seeking psychological support may be viewed as a sign of weakness or failure (Ahad et al., 2023; Kim & Yi, 2014).

We can argue that creative, non-clinical interventions such as art therapy, music therapy, and pet therapy are not just supplementary, but necessary. These non-pharmacological strategies help reduce pain, anxiety, and behavioral distress, while fostering emotional expression and a sense of control, especially in environments where children often feel powerless (St. Jude Children's Research Hospital, 2023; Redman, 2019). For caregivers and siblings, these programs can offer space for healing, communication, and resilience-building that clinical treatment alone does not provide. The Express, Create, Heal (ECH) program, developed by the nonprofit A Moment of Magic, serves as a leading example of how community-based, preventive care can fill gaps in traditional models resulting from a lack of access. ECH’s creative, developmentally appropriate curriculum supports not only patients, but siblings and caregivers as well, recognizing the entire family as part of the care unit (A Moment of Magic, Inc., n.d.). 

The Broader Impact of a Pediatric Cancer Diagnosis

Pediatric cancer affects far more than just the child diagnosed, it profoundly impacts the entire family unit. The National Cancer Institute (2024) defines survivorship to include not only the patient but also caregivers, family members, and close friends. This expanded definition reflects a growing recognition of the widespread trauma that cancer brings into a household and the long-term psychological effects that extend well beyond the treatment period.

A Family Disease: The Psychological Landscape

In most pediatric cancer cases, the emotional burden is not evenly distributed. Caregivers, especially mothers, are often thrust into the role of the child’s primary medical advocate, effectively becoming informal experts on the disease and treatment regimen (Clarke, 2006; Wiener et al., 2015). This role, while necessary, is associated with heightened levels of anxiety and symptoms of PTSD, often surpassing those observed in the children undergoing treatment (Barakat et al., 1997; Best et al., 2001; Lewandowska, 2021). Children are highly perceptive and tend to absorb their caregiver’s emotions. When a caregiver is visibly stressed, children often internalize this, developing feelings of guilt that can manifest as anxiety or depression (Rosenberg & Muriel, 2023). These dynamics create a feedback loop of psychological distress that can be difficult to disrupt without targeted intervention. Siblings of pediatric cancer patients often become what some researchers refer to as “glass children”, visible but emotionally neglected (Hanvey et al., 2022). These children frequently take on additional household responsibilities and suppress their own needs, leading to long-term emotional and academic consequences. Without appropriate psychological support, they risk developing a persistent sense of invisibility or detachment that can continue well into adulthood (Howard et al., 2014).

Silent Sufferers: Mental Health Outcomes in Patients, Caregivers, and Siblings

The trauma of pediatric cancer affects all involved. Common psychological outcomes include PTSD, anxiety, and depression, which affect not only patients but also caregivers and siblings (Barakat et al., 1997; Best et al., 2001). One particularly common experience for survivors is "scanxiety", the intense fear associated with follow-up scans and checkups, where even a routine visit can trigger emotional panic (Rosenberg & Muriel, 2023). For adolescents, the situation is even more complicated. A cancer diagnosis during this stage of life interrupts major milestones of identity formation, independence, and future planning (van Erp et al., 2021). Adding to this, legal guardians often filter the information a teen receives, further diminishing their autonomy and creating confusion around their own medical narrative (Committee on Bioethics, 1995). Young children, while less likely to retain vivid memories of treatment, are still deeply affected by their experiences. Early childhood trauma, including prolonged hospitalization and invasive procedures, can lead to developmental delays in memory and cognition (Joseph, 2003). These effects often resurface later in life, leaving survivors struggling with long-term side effects of an experience they can’t fully remember.

Systemic Barriers to Comprehensive Care

Despite progress in pediatric cancer treatment outcomes, the healthcare system continues to fall short in delivering comprehensive psychosocial care. Many families face roadblocks that go beyond biology, issues rooted in access, affordability, infrastructure, and cultural stigmas. These systemic problems widen the gap between physical survival and emotional recovery, particularly for patients and families navigating complex psychological and socioeconomic realities.

The National Shortage of Pediatric Mental Health Providers

One of the most pressing barriers to psychosocial support in pediatric cancer care is the national shortage of child and adolescent mental health professionals. As of 2023, there are fewer than 10 child psychiatrists per 100,000 children in the U.S., with significant regional disparities (Modi et al., 2022). In some rural or underserved areas, the ratio drops even further, making it nearly impossible for families to access timely care. Even in major children’s hospitals, the wait time for a pediatric psychiatric consultation can stretch from weeks to months. This delay is not merely inconvenient, it often coincides with the most traumatic stages of treatment, when children and caregivers are most in need of psychological support (Yu et al., 2023). Without early intervention, symptoms like anxiety, depression, and PTSD can become ingrained, requiring more intensive treatment later.

Geographic and Economic Disparities

Healthcare access in the U.S. is often a function of geography and income. Pediatric oncology centers are typically located in urban areas, forcing families in rural regions to travel long distances for both treatment and follow-up care. These logistical challenges are compounded when families also need psychosocial services, which are rarely available outside large hospital systems (Liu et al., 2023). Economic constraints further limit access to holistic care. While insurance often covers physical cancer treatments, coverage for psychological services is inconsistent at best. Families may be forced to pay out-of-pocket for therapy, psychiatric medication, or child life services, all while juggling employment instability, transportation costs, and the financial strain of long-term care (Nathan et al., 2018). This makes emotional well-being a luxury rather than a standard part of treatment. Organizations like the Pinky Swear Foundation have stepped in to fill some of these gaps by offering direct financial assistance to families of pediatric cancer patients. However, these efforts, while essential, are patchwork solutions that cannot replace a nationwide standard of integrated psychosocial care (Pinky Swear Foundation, n.d.).

The Stigma of Mental Health in Pediatric Settings

Even when services are available, stigma can prevent families from using them. In some communities, particularly those with strong religious or cultural traditions, mental illness is still seen as a sign of weakness or failure (Kim & Yi, 2014). Parents may fear that seeking psychological support for their child implies a lack of faith or resilience. This stigma is amplified in pediatric settings where the focus is often on survival statistics and physical side effects. Emotional and behavioral symptoms, such as withdrawal, regression, or aggressive behavior, are sometimes dismissed as temporary reactions rather than serious psychological conditions. This dismissal not only delays treatment but can also invalidate the child’s lived experience (Rosenberg & Muriel, 2023). Efforts to normalize mental health treatment within pediatric oncology, such as integrating child life specialists, art therapists, and music therapists, have shown promise. However, these resources are still unevenly distributed across hospitals, and their roles are sometimes misunderstood or underfunded (American Music Therapy Association, n.d.; St. Jude Children’s Research Hospital, 2023).

Conclusion

The psychological impact of pediatric cancer is as real and enduring as the physical illness itself, yet for far too long, the mental health needs of young patients and their families have been underprioritized. This report has shown that a pediatric cancer diagnosis is not an isolated event; it reverberates throughout entire families, often leaving long-term emotional, cognitive, and social consequences in its wake (Barakat et al., 1997; Rosenberg & Muriel, 2023). While medical advances have improved survival rates, survivorship is not synonymous with well-being. The current healthcare infrastructure remains ill-equipped to address these realities. Systemic shortages in pediatric mental health providers, geographic disparities, and persistent cultural stigmas around psychological support all contribute to a fragmented care model (Liu et al., 2023; Modi et al., 2022). Families are often forced to navigate the mental health fallout of cancer on their own, unsupported, under-resourced, and overwhelmed. However, the emergence of nonprofit organizations has revealed a path forward. Community-based programs like A Moment of Magic’s Express, Create, Heal curriculum and others offer targeted, evidence-based interventions that are filling crucial gaps in care. These nonprofits provide not only creative outlets for children but also practical, emotional, and financial support for entire families. Their work underscores a critical truth: mental health care should not be optional, it must be proactive, accessible, and integrated from the moment of diagnosis.

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