Children with complex chronic conditions are disproportionately represented in the child welfare system and their caregivers are significantly more likely to be investigated for medical neglect, according to a new analysis published in Pediatrics.

The findings underscore the need for primary care clinicians to distinguish between caregivers who are unwilling to provide necessary medical care to their children or are unable because of transportation, finances, and inadequate social support, and to exhaust efforts to aid caregivers in fulfilling those needs before reporting.

In an accompanying editorial, Rebecca Seltzer, MD, associate professor of pediatrics at Johns Hopkins School of Medicine in Baltimore urged clinicians first understand the challenges families face before equating missed appointments or lapses in treatment with caregiver neglect.

Clinicians “are not very good at pausing and thinking about the bigger picture of what it actually means to take care of a child who has such complex medical needs at home and really how ridiculous some of what we’re expecting families to be able to do — without adequate supports in place,” Seltzer told Medscape Medical News. 

Researchers from Boston Children’s Hospital, Boston, and Children’s Mercy, Kansas City, Missouri, analyzed linked protective services and Medicaid billing data of more than 610,000 children younger than 18 years in Kentucky and Florida between 2017 and 2020. Types of maltreatment reported included physical abuse, deprivation of necessities, medical neglect, sexual abuse, or psychological or emotional maltreatment.

Nearly 9% of the children in the sample had at least one complex chronic condition, defined as a condition expected to last at least 1 year and requires specialty pediatric care. This might include tracheotomy dependence, congenital heart disease, and neuromuscular disorders.

Nearly two third of children gained their chronic condition diagnosis in the year prior to the first report to welfare services agencies.

In a multivariable analysis, children reported for medical neglect were four times as likely to have a complex chronic condition than those reported for basic-needs neglect (adjusted odds ratio [aOR], 4.53; 95% CI, 4.32-4.76; P < .0001). Children’s odds of having a complex condition were associated with those with placement into foster (aOR, 1.43; 95% CI, 1.37-1.49; P < .0001) compared with those without a condition.

Children younger than age 1 had more than 12 times the odds of having a complex chronic condition than adolescents aged 12-17 years. 

Researchers posited that children with chronic conditions may be subjected to surveillance bias, “given that they have more interactions with the medical system than children without increased medical needs.”

Implications for Primary Care

Rather than waiting until families reach a crisis point necessitating reporting, primary care clinicians should routinely screen caregivers with these children for barriers that could interfere with treatment plans, experts said.

Conversations should include home accessibility, caregiver support, and connections to community resources such as Medicaid waivers, family-to-family information centers, nurse case managers, and social workers, Seltzer said.

Missed appointments, medication lapses, or poor weight gain often stem from transportation barriers, insurance disruptions, or the logistical burden of coordinating care for children who may rely on wheelchairs, ventilators, and multiple specialists, said Wendy Lane, MD, professor of pediatrics at the University of Maryland School of Medicine and medical director of a violence intervention and prevention center in Baltimore.

“Rather than reporting for multiple missed appointments, work with the family to find out what their needs are, what their kids’ needs are, and how those needs can be better met,” Lane said. “We obviously want the kids to get the medical care that they need, and the medical system isn’t always set up to make it easy for parents and other caregivers.”

Seltzer suggested asking families, “‘How do you think we could make this work? What additional help would you need?’”

The American Academy of Pediatrics recommends ensuring that caregivers are able to obtain needed treatments, understand medical recommendations, and acknowledge the consequences of not following them before making a report. 

Clinicians should not hesitate to report once they have exhausted reasonable efforts to support the family, and the child remains at risk.

“You have tried to be flexible with your appointments, you’ve explained, and the parents expressed understanding, and the child still isn’t getting what they need, then you’re really in the position where you have to report,” Lane said.

Lane encouraged clinicians to tell families when they make a report to protective agencies.

Reporting “is a requirement by law, but it’s also a way to assist the family to get the help that they need,” Lane said.

Seltzer encouraged clinicians to periodically reassess whether care plans are practical for families to implement.

Clinicians should be “really thoughtful about how we make sure that the family has a plan in place that is still safe for the child and meets their medical needs but is practical for their daily life,” she said.

Clinicians also do not have to navigate difficult cases alone. Lane encouraged primary care physicians to consult child protection teams or pediatricians who specialize in child abuse when available.

“We deal with these issues a lot and can help other clinicians navigate this process,” Lane said.

Seltzer and Lane reported having no relevant conflicts of interest.

Lara Salahi is a health journalist based in Boston.