The Emotional Toll of Chronic Illness in Childhood

Toward the end of rounds one Saturday, our team of six entered the room of a teenager on the pediatric bone marrow unit. The room was quiet, dark, and filled with the smell of stale hospital breakfast. Our patient was lying in bed silently. He answered our questions politely, but his face remained expressionless as we explained the plan for the day. His sadness was tangible.

I have witnessed this same somberness when interacting with many pediatric patients with chronic diseases, including but not limited to sickle cell disease, chronic kidney disease, and cancer. The medical field puts extensive resources into treating these conditions. However, fewer resources are invested in addressing young patients’ mental health, which is suffering in the aftermath of the COVID-19 pandemic.

Children and adolescents with physical chronic conditions have a 51% higher risk of mental health conditions compared to children and adolescents without chronic physical conditions. Additionally, the risk of self-harm, suicidal ideation, and suicide attempts is significantly increased among this population.

Why is this? It is postulated that decreased school participation and less social interaction with friends are significant contributors to the decline in mental health of pediatric patients, as these activities are crucial for social and cognitive development. From my experiences on the wards, I found that the interactions of young patients with chronic illness were often limited to their family, if present, and the health professionals caring for them. Rarely did I see interaction with peers their own age. Notably, there are children of similar age around — in the rooms next to, across, and down the hall from them. Though, even with available community spaces, I noticed that the kids seldom used them together.

Research has shown that peer-to-peer interaction among individuals with chronic disease can have a positive impact on both mental and physical health outcomes. For instance, a meta-analysis of randomized trials among adults with diabetes found that peer support, including hospital-based interaction, was associated with decreased depression and improved sugar control, blood pressure, cholesterol, weight, physical activity, and self-efficacy. Another study suggested that individuals with chronic kidney disease who received self-management support, which included a peer support component, experienced fewer hospitalizations and slowed progression of disease. These effects may be applicable to the pediatric population too.

One approach to promoting mental well-being among pediatric patients is conducting daily group social sessions that actively facilitate conversation, game play, and camaraderie between chronic inpatient peers. Since not all patients are able to participate in-person, having an online option is also beneficial. In fact, one study focused on children and adolescents with medulloblastoma found that information and communication technologies, namely the internet and phones, were effective at promoting socialization even when physical isolation was necessary.

A second initiative is to widely implement hospital school programs, an idea encouraged by the American Academy of Pediatrics. In Italy, for example, hospital schools have been utilized for decades with the purpose of easing psychological burden and protecting educational opportunity. They have been thought to provide a feeling of normalcy. While some U.S. institutions, such as the children’s hospitals of Philadelphia and Atlanta and the Hospital Schools Program of New York, have already enacted such programs, they are not always easily accessible throughout the entire country.

To be sure, group social sessions and hospital school programs are not the only solutions for addressing the multifactorial mental health challenges of this population. These options certainly may not be feasible for every child or adolescent with chronic disease. However, it is clear that the lack of social interaction and usual activity (like school) play a role in the psychological struggles these young individuals face. The aforementioned strategies can offer a protective approach.

The faltering mental health of pediatric patients with chronic disease is something health professionals and health systems should address with vigor. Revisiting the encounter with our teenage patient awaiting a bone marrow transplant, our team was able to summon a small smile by offering his meal of choice — a Subway tuna sandwich. We also intentionally allocated extra time for conversation and attention. Though we did all we could in the moment, I hope we will have more we can offer youth experiencing similar situations in the future.

As healthcare workers and advocates, our job is to consistently explore ways to improve the holistic care of every person we are privileged to care for. There is no time to waste when it comes to instituting promising hospital initiatives to better meet the mental health needs of children and adolescents experiencing chronic illness.

Jordyn J. Williams is an MD/MPH candidate in the class of 2025 at the University of Miami Miller School of Medicine.

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