Parents of children with medical complexity face significant challenges with at-home medical devices despite relying on them for essential care, according to research from the Stanley Manne Children’s Research Institute at Ann & Robert H. Lurie Children’s Hospital of Chicago. The study, published in the journal Pediatrics, involved semi-structured interviews with 17 participants, with eight submitting 97 total photos documenting their devices and home setups.
The research identified five major themes in parent experiences. There is a lack of communication and education about in-home medical product availability among suppliers, providers, and parents. Commonly used devices—such as pulse oximeters, suction machines, and feeding pumps—frequently have major design flaws that create safety risks and diminish quality of life. Parents often address unmet needs and design flaws through improvised problem-solving strategies. Structural barriers, including insurance processes and supplier delays, reduce access to high-quality medical devices. Parents prioritize durable, intuitive, and dependable products that are safe and child-friendly.
Previous research has linked challenges with home device use to emergency department visits, hospitalizations, and instances where parents create workarounds to manage inadequate equipment. According to Carolyn Foster, MD, MS, Director of the Health@Home Initiative and pediatrician at Northwestern University Feinberg School of Medicine, “in-home user experience is critical when designing medical devices.” She emphasized that parent and family advisory boards may help designers understand the real-world consequences of design choices within the home setting.
To improve the safety of at-home medical devices, the research team advocates for including parent voices as integral to the design process. The study was a collaboration between the Foster Health Lab and initiatives within the research institute, including Health@Home and Innovate2Impact. Improving device design and the processes surrounding their acquisition and use could help prevent emergency visits and hospitalizations while enhancing daily quality of life for affected families.
This article is an AI-assisted summary. All facts and figures are drawn from the original report: https://www.newswise.com/articles/parents-of-children-with-medical-complexity-report-major-challenges-with-at-home-medical-devices/?sc=rsmn