Pediatric chronic pain doesn’t just affect the children experiencing it—it transforms the lives of their entire families. Parents and guardians seeking answers face a cascade of challenges as they attempt to navigate an increasingly complex, expensive medical system that is not built with their needs in mind.

Caregiving demands, financial strain, and emotional exhaustion leave families scrambling—searching for support and stability in a system that, in prioritizing profit over pediatric health, often places that support out of reach. 

In 2025, the U.S. Pain Foundation conducted a national survey for parents of children and teens living with chronic pain. The findings, incorporating responses from 87 parents or guardians, lay bare the silent financial and economic echoes of pediatric pain, and the urgent need for systemic change—financially, emotionally, and structurally.

The Financial Fallout of Chronic Pain in Children

The data is sobering:

• 41% of parents or guardians were unable to work due to caregiving responsibilities
• 24% had to change careers
• 18% lost their jobs altogether

This isn’t about missing a few days of work—it’s about careers derailed, finances undermined, dreams deferred, and futures fundamentally changed. Between medical costs and the lack of caregiving support, pediatric chronic pain doesn’t just strain families—it financially devastates them.

In their own words, parents described the impossible choices they face:

“[My] work is suffering. Unsure how long I can keep this up.” 

“Changed job to get better health insurance.” 

“[I struggle with] having the energy to work and do appointments for my son and me.”

Career disruptions are compounded by high out-of-pocket costs. 43% of families spent over $5,000 on pediatric pain care annually; 18% spent over $10,000. (These figures do not include insurance premiums.) These are the price tags for essential, non-optional therapies and treatments—placing a daunting burden on families who must juggle funding their child’s medical care with the time and effort of taking them to appointments and providing care.

It’s easy to see why the most common theme in the survey was parents’ desperate need for help:

“[We need] support for the caregivers and the siblings, including emotional support, financial support, and reprieve… help with the financial aspect of having a child with chronic pain, and assistance accessing grants or funds to help the families with meeting their needs.” 

“[We need more access to] funds to help pay for things not covered.”

Insurance Denials and Bureaucratic Barriers

Chronic pediatric pain frequently falls outside the lines of what traditional health insurance systems are designed to support. Families often find themselves fighting for the care their child’s doctors recommend.

• 55% reported insurance didn’t cover essential treatments
• 48% said that high co-pays and deductibles were a barrier to care
• 39% experienced prior authorization hurdles
• 37% faced “fail-first” step therapy policies

In the past year, 51% of families had been forced to decline at least one recommended or prescribed treatment for their child due to cost—18% had needed to decline four or more treatments.

Respondents described specialist referrals that are denied, complex treatment plans that often aren’t covered, and insurance that delays or denies treatments, limits the number of appointments—and barely covers the basics. One common theme was the fight to have restorative, complementary, alternative, or integrative care covered:

“[One thing I would change about pediatric care is] the constant re-evaluating of the need for physical therapy by the insurance companies. It’s very stressful to have to worry if they will actually renew his physical therapy. It should be his actual doctor and physical therapist that make the decision, not some doctor at the insurance company.” 

“Allow clinicians to decide the best treatment for the individual, not the government or special interest groups.”

“[We need] access to, and insurance coverage for, alternative therapies.” 

“[Families need] nontraditional treatments—that are paid for.”

These policies place profit above children’s health—complicating care, delaying treatment, and adding to parents’ already-strained mental load. 

Lack of Workplace Protections and Caregiver Burnout

Finances are only the beginning. The burden these parents and guardians shoulder, exacerbated by a lack of professional support, extends deep into their own emotional and physical well-being. Almost all parents—95%—had not been offered caregiver benefits by employers, with only 5% receiving paid leave or Family and Medical Leave Act (FMLA) benefits. When the weight of caregiving is met with limited to no assistance, the consequences are often severe.

“My health has declined… [I’m] unable to wrestle out enough time for my own care due to my child’s need for care.” 

“[I’m worn out from the] stress of balancing work and caregiving responsibilities.”

This lack of support leaves parents isolated and stretched thin—burned out, depressed, and physically exhausted. Nearly 70% of parents reported feeling overwhelmed, and 67% lacked time for basic self-care, relaxation, or personal needs. The balancing act of funding and managing their child’s convoluted care never ends. Many even wrestle with the fear that the system will remove their child from their care due to the complexity of chronic pain management or contradictory recommendations from providers and health institutions:

“[We need] access—security in seeking care without being worried about medical kidnapping.”

“Medical kidnapping scares us.” 

“I’m the only family member that helps during significant pain flares, hospitalizations, doctor appointments.”

Rather than being isolated cases, these insights reflect systemic neglect.

The Reality Behind the Numbers

These findings reflect a widespread, deeply personal crisis. It’s about children being denied the care they need. Families isolating from support systems, or never having access to them at all. And parents burning out under the weight of it all.

“[We need] financial support, more flexible insurance coverage, more robust time-off policies and financial supports for families who need to take a lot of time off to care for their medically complex children and support them in their many therapies and appointments.” 

“I just want the professional caregivers to take care of my child.”

These families aren’t asking for special treatment—they simply need a system that sees them, values them, and supports them.

What Would a ‘Financially Just’ System Look Like?

An equitable system would do more than reimburse—it would recognize, protect, and support these families. It would:

• Provide direct caregiver stipends or tax credits to families of medically complex children
• Mandate workplace protections such as:
  • Paid family leave
  • Flexible scheduling
  • Job protection for caregivers
• Expand Medicaid, Medicare, and private insurance coverage to include complementary therapies
• Offer grants or subsidies for out-of-pocket expenses
• Support coordinated care models to reduce the administrative burden on parents

This is not an impossible dream. And it’s certainly not too much to ask. In some countries, families already have access to this type of aid.

Parents of pediatric pain patients are pleading for:

“More access, more affordability, more care for these kids, more of everything that they need.”

“That it not be so hard to get help.”

Rethinking Equity in Pediatric Pain

Equity in pediatric health is not just about access to treatment—families must be able to seek and undergo that treatment without risking financial ruin. 

If nothing changes, families will continue to struggle, paying the price for a health care system that is not built to effectively address chronic pain—particularly not in children.

Equity means recognizing that caregiving is labor. It means building systems that don’t penalize parents for showing up for their children. It means making financial justice a cornerstone of health care policy—not an afterthought.

To learn more about the U.S. Pain Foundation’s Pain Awareness Month initiative, click here.