Study: Families of Medically Complex Children Often Fix Home Care Safety Problems Themselves

A study from Lurie Children's Hospital examined how parents of children with complex medical needs handle care at home. It found that families frequently encounter safety problems with devices, supplies, or medications and often devise their own solutions without involving the clinical team. Researchers suggest earlier and ongoing collaboration between parents and care teams could prevent safety events and reduce isolation.

A Chicago children’s hospital team studied 21 English- or Spanish-speaking parents nationwide. For a week, parents answered surveys twice daily, sending texts and sometimes photos or audio; later interviews explored their experiences. Many managed tube feeding, medications, and equipment at home, where they met supply shortages, malfunctioning pumps or syringes, and hazards they had come to treat as routine.

About one in twenty U.S. children under 18 has complex medical needs, often involving multiple organ systems and tube-based technology. Parents frequently solve safety problems themselves and may not tell clinicians. The authors argue that starting collaboration when devices are prescribed and continuing it could spread practical fixes, prevent harm, and lessen isolation.

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