Easing the Burden

For two School of Nursing faculty, pediatric palliative care and symptom science drive their innovative research

By Grace Houdek

Easing the Burden: an adult stands next to a child holding an umbrella over the child's head

The Effects of Discordance

When Assistant Professor Kitty Montgomery, PhD, RN, PCNS-BC, CPHON, noticed misalignment in the way young children with cancer report their symptoms compared to the way their caregiver does, she scratched her head and wondered why this occurs.

“Children with cancer and their parents don’t always agree on the symptoms the child is experiencing,” says Montgomery. “More often, parents are saying symptoms are there when the child says they are not, or that the symptoms are there, and they are happening at a higher degree.”

According to Montgomery, this discordance can occur for various reasons, including if the caregiver themself has a history with handling mental or physical illness, or is also living with a chronic health condition. Parents may feel more “in tune with what’s going on, both from a psychological and physical perspective, and therefore feel like they are recognizing more symptoms than their child is reporting,” said Montgomery.

The results of this could mean improper courses of treatment. Overestimating symptoms raises the concern of putting the child on incorrect or unnecessary medication, and if symptoms are underestimated, then the child may not receive the proper care they need. While research on the effects of discordance is ongoing, Montgomery notes, “Evidence suggests parents can overestimate physical symptoms, but underestimate psychological symptoms, or those that don’t have an obvious visual cue.”

This discordance is why it’s important to not rely solely on the parent’s symptom report. It’s because of this that Montgomery’s research focuses on children, specifically children with advanced cancer, using their symptom reports and gathering data utilizing technology to generate better patient-reported outcomes.

It comes with many challenges. While children can inform their health care team about how they are feeling, symptom experiences look and sound different from one child to the next. “We still don’t have answers to the question that guides our work; why do children who have the same disease and same treatment have vastly different symptom experiences,” said Montgomery. “One of the gaps we have clinically is we don’t have a systematic way that we assess symptoms. We have all these nice tools, but they are not integrated into the clinical setting.”

Because of this, Montgomery has found that it is crucial to use the child’s input whenever possible while also ensuring assessments are done through child-friendly language that is specific to adolescent development.

The hope, she says, is to advance the science further by investigating patterns of symptom burden in children with advanced cancer to enhance the understanding of factors that place children at risk for high symptom burden. “If we can identify those factors, we can implement personalized symptom management strategies to mitigate suffering and improve quality of life,” said Montgomery.

Montgomery acknowledges that trying to completely get rid of symptoms is a hard ask, but points out that management of symptoms can be better, saying, “We’re not going to come out and say we can achieve zero symptoms, suffering, or distress — but we should be able to reduce it.”

The “Long Arm” of Pediatric Illness

Addressing symptom management at a young age with the goal of bettering palliative care is important when it comes to management of a serious or chronic illness. However, Assistant Professor Anne Ersig, PhD, RN, also notes that it has the potential to address long-term health as it helps to alleviate stressful situations that can have lasting impacts on one’s life course.

Ersig focuses her research on stress and anxiety associated with chronic illnesses, exploring how adolescents with childhood chronic health conditions, as well as their families, respond to illness-related stressors.

Through her research, she has found that it is common for children to have high levels of stress due to their illness. “Experiencing stress from a chronic condition is normal, [the illness] is a stressful situation,” said Ersig. “People are unique, but it’s likely that anyone who experiences it is going to undergo some degree of stress from it. The goal is to make sure that stress is well managed and is as low as it can possibly be for each person.”

“One of the gaps we have clinically is we don’t have a systematic way that we assess symptoms. We have all these nice tools, but they are not integrated into the clinical setting.” — Kitty Montgomery 

While there is little research to know the life-long effects of childhood chronic illnesses on mental health at the moment, Ersig has found that the extremity and presence of stress in one’s adolescent years has a “long arm” into adulthood and is higher for those with childhood-onset chronic illnesses. “The immediate effects of early life stress and adversity on children’s lives are profound,” said Ersig. “Evidence also connects early life adversity with adult health and well-being. This means that we need to improve identification of those at increased risk earlier in their lives, and then develop and apply appropriate interventions to improve health and well-being across the entire life course.”

Ersig notes that most kids with chronic health illnesses have normal life expectancies – meaning they will be living with, and managing, symptoms that come naturally for a long time.

“We’re not likely to ever be able to cure them all. We may be able to mitigate some of the effects of [their illnesses], but there are always going to be chronic health conditions that need to be managed, and there’s always going to be stress generated from living with those health conditions,” said Ersig.

Finding The Right Tools for the Job

While illness-related stress will most likely never go away, nurse researchers like Montgomery and Ersig are hoping to make life a little easier for pediatric patients by providing them with proper tools and care to address their needs — both short and long term.

After asking the “why,” they are now both addressing the “how.” Instead of allowing health care workers to maintain reactionary methods, they are finding ways to be more proactive in assessing and treating symptoms earlier and more accurately.

Knowing that there is still work to be done and questions to be answered, research by Montgomery and Ersig is ongoing. However, both have earned recent recognition for their work and each have been awarded several grants to support their respective areas of research.

For both Montgomery and Ersig, the work they are doing to improve palliative care and symptom science for pediatric patients highlights just how important it is for nurses to continue to ask the important questions as they continue to search for ways to ease not just the short-term, but long-term symptom burden for pediatric patients.