Parents of children with medical complexity are quietly solving safety problems at home that their care teams may never hear about. In a new study from Ann & Robert H. Lurie Children’s Hospital of Chicago, the most common challenge was not a dramatic emergency. It was trouble getting tube-related supplies, medications or equipment, which 24% of reported safety challenges involved. This guide explains what the researchers found, what it does and does not prove, and a practical checklist for families. It is general information, not medical advice.
What the Lurie Children’s study found about children with medical complexity
The research was published in Pediatrics in 2026 and reported by Medical Xpress. Lead author Peter Walsh is a behavioral research coordinator at the Foster Health Lab. Senior author Carolyn Foster, M.D., M.S., directs the Health@Home Initiative at Manne Research Institute and is an assistant professor of pediatrics at Northwestern University Feinberg School of Medicine.
The team recruited 21 parents from across the country. Parents could speak English or Spanish. All of them cared at home for children with medical complexity who rely on tube-related technology.
The central finding for children with medical complexity and their families is simple. Parents spotted safety gaps early, built their own systems to prevent harm during routine care, and often did not tell the care team about either the problems or the fixes.
What does “medical complexity” mean?
Children with medical complexity are kids who live with serious, long-term health conditions that affect several organ systems at once. Cerebral palsy is one example named in the report. Many also depend on medical technology, such as an implanted tube used for feeding or medication.
According to the background in the report, about 1 in 20 U.S. children under 18 are medically complex. Most of their care happens at home, not in a hospital. Parents act as the daily manager of devices, medications and nutrition.
That is a lot to carry. A pump setting, a syringe or a supply shipment may seem small on paper. For a child who depends on that equipment, it is not small at all.
How the researchers listened to parents
The study used a method designed to capture real life as it happens. Over one week, parents answered surveys twice a day by text message about their child’s tube-related care. They could also send photos or audio recordings if words were not enough.
After the week ended, the researchers interviewed each parent. This mix of in-the-moment reports and follow-up conversations gave the team a closer look at everyday routines than a single after-the-fact questionnaire might.
The tools were simple on purpose. A text message is easy to answer between feeding, medication and bedtime routines.
The three biggest safety challenges
The researchers reported three leading categories of safety challenges. Here are the percentages as given in the report.
| Safety challenge | Share reported | Example from the report |
|---|---|---|
| Supply issues | 24% | Difficulty obtaining tube-related supplies, medications or equipment |
| Devices not working as intended | 22% | Inconsistent feeding pumps, broken medication syringes |
| Care irregularities experienced as normal | 20% | A feeding tube wrapping around the child overnight |
The third category deserves a closer look. Some problems had become so routine that parents experienced them as part of normal life. When a hazard is treated as normal, it is less likely to be reported to anyone.
Walsh said, “Our findings highlight parental ingenuity and resourcefulness in developing strategies to tackle safety challenges.” In other words, the parents were not careless. They were adapting to gaps in the system, often alone.
Why parents’ workarounds often stay hidden
The report says parents often did not share these challenges or their solutions with the care team. It does not spell out why in the material we reviewed. Plausible reasons, which are our reading and not findings, include limited time in appointments, not wanting to seem like they are complaining, or assuming that clinicians already know.
The cost of silence is that every family may end up solving the same problem separately. A trick one parent discovered for a pump that runs inconsistently stays in one household instead of helping many.
Foster said, “Our research suggests that proactive measures are necessary.” The authors’ recommendations, below, are built around that idea.
What the authors recommend for children with medical complexity
The authors offered four ideas for clinicians and health systems:
- Give parents proactive tips for common safety issues, so they do not have to solve the same problems again and again.
- Start safety conversations when a device is first prescribed, not after something goes wrong.
- Simplify and individualize care plans so they fit the child and the household.
- Make sure parents know whom to contact when problems arise. Foster described this as a setting “where parents know who to call if they face challenges.”
None of these ideas requires new technology. They are changes in how information is shared, and when.
A practical checklist for families and caregivers
The study does not provide a family checklist for children with medical complexity, so the steps below are our general suggestions based on the challenges it describes. They are not a medical protocol. Your child’s care team knows your child’s needs, and their guidance comes first.
Plan for supplies before they run low
- Keep a simple supply log with what you have, how much you use and when you reorder.
- Write down who supplies each item and the phone number to call if a shipment is late.
- Ask your care team what a safe backup plan looks like if a supply or medication is delayed.
Track device problems
- Note every time a feeding pump, syringe or other device does not work as expected. Include the date, what happened and what you did.
- Take a photo or short video when it is safe to do so. The study itself allowed parents to share photos and audio.
- Bring the log to appointments, or send it through your clinic’s portal if one is available.
Know who to call, and when
- Ask your care team who to call after hours, and save the number in your phone.
- Ask what problems need a same-day call and which can wait until the next visit.
- Keep an emergency information sheet that lists diagnoses, medications, devices and key contacts. Keep a copy where a babysitter, relative or first responder can find it.
Share your workarounds
If you have found a way to prevent a problem, tell your clinicians. It may help your child’s care, and it may help other families. Something you view as an ordinary habit could be exactly the safety tip another parent needs.
For general child-health guidance from pediatricians, the American Academy of Pediatrics runs HealthyChildren.org.
What the study cannot tell us
This was a small, early look, and it is worth being clear about its limits. These are our observations, not claims made by the authors.
- Small sample. Only 21 parents took part, so the results may not reflect all families.
- Short window. Parents reported for one week, which may miss problems that happen less often.
- Volunteers. Parents who choose to join a study may differ from those who do not.
- Unclear percentages. The article does not say how the percentages were calculated, or whether they refer to all reported challenges.
- No harm data. The report does not say how often these gaps led to injuries or hospital visits.
For children with medical complexity in general, treat the 24%, 22% and 20% figures as a snapshot of what these parents reported, not as national rates. Larger studies would be needed to say how common each problem is.
How to support a family caring for children with medical complexity
If you know a family in this situation, you do not need medical knowledge to help. Many of the best offers are practical and specific.
- Offer something concrete, such as a meal, a ride, or an hour of sibling care, instead of “let me know if you need anything.”
- Ask how they are doing, and then listen. They may be managing a long list of daily tasks.
- Respect their expertise. Parents of children with medical complexity often know the child’s equipment better than anyone else in the room.
- Keep your own illness out of the house. Staying home with a cold is a real kindness, and our guide to flu vaccine for kids in 2026-27 covers one way families can reduce the risk of seasonal illness.
Caregiving is also a strain on the people doing it. Our look at a family media plan for screen time shows how small, planned routines can ease household pressure, and the same spirit applies here. For another example of how children’s safety research can point to simple prevention steps, see our report on e-bike injuries in kids.
The takeaway for parents, clinicians and neighbors
The Lurie Children’s study suggests that safety for children with medical complexity depends on information moving in both directions. Parents are already working hard to prevent harm. What they may need is earlier guidance, simpler plans and a clear person to call.
If you are a parent, start small this week. Write down your supply status, log any device that misbehaves, and ask your care team one question: “Who do we call after hours?” Then share one workaround you rely on. If you are a clinician or a neighbor, ask the question first.
This article is for general information only and is not medical advice. Talk with your child’s doctor or care team about your child’s specific needs, and call emergency services for any urgent problem.
