Parents of children with medical complexity report that they rely on various medical devices for essential care of their kids at home, yet the processes of obtaining and using these devices are inadequate and often pose safety risks, according to a study from Stanley Manne Children’s Research Institute at Ann & Robert H. Lurie Children’s Hospital of Chicago. Findings from interviews with parents were published in the journal Pediatrics.
“Prior research has linked challenges with home device use to emergency department visits, hospitalizations and parent workarounds,” said lead author Peter Walsh, Behavioral Research Coordinator at Foster Health Lab at Manne Research Institute at Lurie Children’s. “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.”
For the current study, researchers conducted semi-structured interviews with 17 participants. After each interview, parents could opt in to share photos of devices, related storage, or transportation set-up in their home. Eight participants submitted 97 total pictures with descriptions.
Five main themes emerged:
Lack of communication and education about in-home medical product availability between suppliers, providers and parents
Commonly used medical devices, such as pulse oximeters, suction machines, and feeding pumps, frequently have major design flaws, which lead to safety risks and diminish quality of life for children with medical complexity and their family
Parents often addressed unmet in-home medical product needs and major design flaws with improvised problem-solving strategies
Structural barriers, such insurance processes and supplier delays, reduce access to efficacious and high-quality medical devices
Parents prioritize a variety of design attributes in medical devices, valuing durable, intuitive and dependable products that are safe and child-friendly
“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.”
Carolyn Foster, MD, MS, Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine
“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,” said senior author Carolyn Foster, MD, MS, pediatrician and Director of Health@Home Initiative at Manne Research Institute, as well as Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine.
Dr. Foster is the Yaeger Family Research Scholar at Lurie Children’s.
The study was a collaboration between the Foster Health Lab and initiatives within the research institute – Health@Home and Innovate2Impact.
Ann & Robert H. Lurie Children’s Hospital of Chicago is a nonprofit organization committed to providing access to exceptional care for every child. It is the only independent, research-driven children’s hospital in Illinois and one of less than 35 nationally. This is where the top doctors go to train, practice pediatric medicine, teach, advocate, research and stay up to date on the latest treatments. Exclusively focused on children, all Lurie Children’s resources are devoted to serving their needs. Research at Lurie Children’s is conducted through Stanley Manne Children’s Research Institute, which is focused on improving child health, transforming pediatric medicine and ensuring healthier futures through the relentless pursuit of knowledge. Lurie Children’s is the pediatric training ground for Northwestern University Feinberg School of Medicine. It is ranked as one of the nation’s top children’s hospitals by U.S. News & World Report.
(Newswise/HG)
