DISBELIEF, SCHOOL CHALLENGES, AND COMPREHENSIVE CARE: TACKLING BARRIERS FACING CHILDREN LIVING WITH PAIN
In the United States, 50 million individuals live with chronic pain—about 1 in 6 people. This metric, while staggering enough, only includes adults.
To shed more light on pain experienced by children, the U.S. Pain Foundation conducted a survey in 2021 regarding pediatric pain and published a findings report. The responses of the 125 families participating in the survey painted a bleak picture of struggles across the entire spectrum of pediatric pain treatment.
For instance, 82% of parents indicated their child has had pain at least half of their lives. The emotional toll is clear, too: 84% have experienced anxiety, 79% have felt isolated, and 48% expressed guilt about being sick. Alarmingly, the survey found that more than one in five of their children had considered suicide, 16% had carried out self-harm, and 4% had attempted suicide.
Much remains ambiguous about youth pain—and there are many challenges that stand in the way of effective treatment for children.
Letting children speak up
Parents often play middleman, helping their children communicate with medical staff and process information about their condition.
“Many children look to their parents to do most of the talking during [appointments],” says Robert Wilder, MD, PhD, an anesthesiologist at Mayo Clinic who specializes in pain and works in pediatric and adolescent medicine.
He also serves as president of the Society for Pediatric Pain Medicine (SPPM | pedspainmedicine.org). “Sometimes a parent will dominate the interview even when the child is willing and able to answer.”
Even if the motivations behind these actions are good, such patterns from parents can distort the treatment process for children. Allowing children to speak up about their pain and needs whenever possible is crucial to getting the best treatment possible.
Difficulties in school
Challenges at school are intertwined with children’s pain as well.
“Stress from school can trigger or amplify the pain experience,” shares Cristina Benki, PhD, a pain psychologist with the University of California San Francisco’s (UCSF) Benioff Children’s Hospitals who works with kids and teens living with chronic pain and illnesses. “They may have less motivation to go to school because they’re in pain.”
Unfortunately, many of the school environments Benki and Wilder have seen aren’t ideal for children living with pain or other health challenges.
“School districts vary widely in their willingness to support children with chronic pain,” Wilder shares. “Some are quite supportive in allowing accommodations to allow patients to stand up in class, have extra time in passing between classes, or have water bottles. Others do not allow any accommodations at all and prefer to simply send patients home.”
School closures during the COVID-19 pandemic highlighted how some students thrive while working at their own pace from home.
Wilder elaborated, “Recent evidence says that pediatric chronic pain actually decreased during the pandemic. This data suggests that school stress worsens chronic pain.”
Access to comprehensive care
Of families surveyed by U.S. Pain, 65% couldn’t find a provider who was knowledgeable about their child’s condition, and 38% said that their children would benefit from, but cannot access or afford, working with a pain management specialist. Many insurance companies will only cover a certain amount of physical therapy or occupational therapy a year, and children living with a chronic illness are apt to go through those appointments quickly.
A significant number of families expressed a desire to access restorative therapies. But unfortunately, more than 60% of survey respondents reported having to forego services and treatments due to the cost.
“People just say, ‘You should go try a massage,’ ‘Go try acupuncture,’ ‘Go try heat therapy,’ but those treatments all have a dollar sign associated with them,” says Casey Cashman, director of the U.S. Pain Foundation’s Pediatric Pain Warrior program.
Hope starts with believing kids about their pain
While the landscape of pediatric pain can seem grim, children with pain may actually have a greater chance of improvement than adults with similar issues: “With chronic pain in pediatrics, especially because children’s brains are more flexible and can adjust more easily than adult brains, we see a better prognosis for treatment of chronic pain with children than adults,” Benki says.
One important consideration is to recognize that children’s pain is real and examine its effect on the child’s life as a whole.
“If you look at the definition of pain put out by the International Association for the Study of Pain, pain is both an emotional and physical experience,” Benki says. “In terms of treating pain, you have to address both. If you’re not addressing pain through that lens, you’re not getting full treatment.”
A successful path forward also starts with schools, society, and health care providers believing children about their pain. Of the families taking the survey, 58% felt their provider didn’t believe their child or take them seriously.
“Children feel pain, and they can feel it at the levels they are saying they are feeling it at,” Cashman says. “Don’t discredit those children, and don’t discredit the families. Hear them, listen to them, believe in them, because the minute you believe in them, that opens the doors for so much better communication. If a child and family feels that support, the chance of a greater outcome and having them reach their goals is going to be so much greater. If we all believe in them, then they can believe in themselves.”
—Emil DeAndreis