Editor’s Note: Beth Dworetzky's son was born with a complex heart condition. She and her son navigated a fragmented health care system for 31 years until his death in October 2021. -Cara L. Coleman, JD, MPH, Associate Editor, Pediatrics
Family Connections with Pediatrics
Having a child in a pediatric intensive care unit (PICU) is stressful. Even when children do not have chronic or complex health needs, a PICU stay means they need a special level of care. This might include:
- Pain management,
- Need for medical technology, such as a ventilator, and
- Need for one-on-one nursing.
And, while parents can be with their child at all times and may even be able to stay with their child overnight, parents can only be in the PICU with permission, as there are times when doctors and nurses are doing invasive procedures that require a sterile space.
There is constant activity and so many people involved in care that it can be hard to know who’s who in the PICU. In addition to nurses and the child’s personal doctor, there’s the PICU team of doctors, which includes:
- Attending doctors, who are the people in charge of each specialty team.
- Fellows, who are doctors who have completed their residency, and who want to specialize in a particular area.
- If it’s a teaching hospital, there may be residents rotating through the PICU. Residents have completed medical school—and so they are doctors, who are getting real-world experience by working in hospitals or other healthcare settings.
- There may also be medical students, who are attending school and learning to be doctors.
It’s hard enough to track all the people in a PICU even when you speak English. Imagine how difficult it is for families who speak a language other than English.
This month’s Pediatrics includes an article titled "Medical Complexity, Language Use, and Outcomes in the Pediatric Intensive Care Unit" (10.1542/peds.2023-063359). The authors wanted to learn if and how the language a family spoke affected length of stay in the PICU and other outcomes for children with medical complexity (CMC).
How did the authors study this?
The authors looked at 10,011 PICU encounters in the records at a single hospital over a 5-year period by more than 6,800 patients (some patients had more than one admission to the PICU during the study period). They looked at length of PICU stay, days the child did not need a ventilator, and days a child did not have organ system problems.
What did the authors find?
- Access to interpretation for languages other than Spanish required advance notice.
- Families who spoke a language other than English had more barriers to care than families who spoke English. This included higher healthcare costs, communication issues, and trouble understanding medical information.
- Families who spoke a language other than English or Spanish were less likely to ask the doctors questions about their children’s care and more likely to be at risk for adverse events. This included readmission to the PICU and medication errors. Longer stays also put the child at risk of hospital-acquired infections.
- Families who spoke a language other than English or Spanish had longer PICU stays, higher use of ventilation, and more days with organ system problems. There was no difference in length of stay for families of CMC who spoke English or Spanish.
What can you do with this article?
- Share the article with your child’s doctor. Use it to talk about challenges with access to information about the care of your child in your preferred language.
- If you have ideas to improve access to interpretation services and translated materials at your hospital, speak with the Patient and Family Advisory Council or Patient Experience department.
- Connect families with the Family-to-Family Health Information Center in your state, territory, or Tribal Nation. These family-run centers help families of children with special healthcare needs understand healthcare systems in their state, work in partnership with providers, and improve systems of care for all children and families.
