Parents of children with medical complexity face significant challenges when using at-home medical devices, according to a recent study from Stanley Manne Children’s Research Institute at Ann & Robert H. Lurie Children’s Hospital of Chicago. The findings, published in the journal Pediatrics, highlight issues related to device design, access, and communication.
Lead author Peter Walsh, Behavioral Research Coordinator at Foster Health Lab at Manne Research Institute at Lurie Children’s, stated: “Prior research has linked challenges with home device use to emergency department visits, hospitalizations and parent workarounds. In our study, we aimed to understand parent experiences with in-home devices and identify opportunities for improvement. We hope to advance pediatric device product research and development to better support the wellbeing of children with medical complexity in their everyday lives.”
Researchers conducted semi-structured interviews with 17 parents. Eight participants also submitted a total of 97 photos depicting devices and how they are used or stored at home. The study identified five main themes:
– There is a lack of communication and education about available in-home medical products among suppliers, providers, and parents.
– Commonly used devices such as pulse oximeters, suction machines, and feeding pumps often have major design flaws that can pose safety risks and reduce quality of life.
– Parents frequently address unmet needs or flaws by improvising solutions themselves.
– Structural barriers like insurance processes and supplier delays limit access to effective devices.
– Parents value durable, intuitive products that are safe and child-friendly.
Senior author Carolyn Foster, MD, MS—pediatrician and Director of Health@Home Initiative at Manne Research Institute—emphasized the importance of user experience: “We found evidence that in-home user experience is critical when designing medical devices, so that common device flaws and the needs of children with medical complexity and their families could receive greater attention. Parent and family advisory boards may help designers appreciate the real-world consequences of design choices within the home setting. To improve the safety of at-home medical devices, parent voices should be integral to the design process.”
Dr. Foster is also an Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine.
The project was a collaboration between Foster Health Lab as well as Health@Home and Innovate2Impact initiatives within the research institute.
Ann & Robert H. Lurie Children’s Hospital of Chicago is a nonprofit institution dedicated to providing care for every child regardless of circumstance. The hospital operates its primary campus in downtown Chicago along with several outpatient centers across the region (official website). It serves as Illinois’ only independent research-driven children’s hospital—a distinction held by fewer than 35 hospitals nationwide—and acts as the main pediatric teaching affiliate for Northwestern University Feinberg School of Medicine (official website). Lurie Children’s focuses on delivering clinical services across more than 70 pediatric specialties (official website), training future specialists, supporting family-centered care models (official website), advancing innovative research through Stanley Manne Children’s Research Institute (official website), and consistently earns national recognition for excellence from U.S. News & World Report (official website).
