Information needs for designing a home monitoring system for children with medical complexity
Section snippets
What we know
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Children with medical complexity (CMC) are a growing population of medically fragile children who have recurrent emergency department and hospital admissions due to frequent acute escalations of their chronic conditions.
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mHealth tools are suggested to support CMC home monitoring and prevent admissions.
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Yet, no mHealth application or home monitoring system has ever been developed for CMC.
What the current study adds
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The current study assesses user information needs and determines design features for developing a novel mHealth application for supporting home monitoring of CMC.
Setting
The qualitative study was conducted at Primary Children’s Hospital (PCH), a freestanding academic children’s hospital in Salt Lake City, Utah, affiliated with the Department of Pediatrics at the University of Utah, School of Medicine. PCH has 289 licensed beds, and is owned and operated by Intermountain Healthcare, an integrated health care delivery system serving patients in Utah and portions of the 5 surrounding states. About 1880 CMC are admitted to PCH annually, accounting for 3500 ED
Participant descriptions
Thirteen primary caregivers of CMC participated in 3 focus group sessions, including 4 in the first, 5 in the second and 4 during the last session. Participants were mostly female (2 males), Caucasian (1 Asian), and married (1 single). Caregivers included one mother of two children, a mother/father dyad, a grandmother, a father, and 9 mothers of 14 children; five of the children were adopted. Overall, the 13 CMC of these participants were between ages 18 months and 19 years (mean = 9 years),
Discussion
The objectives of our study were to assess the information needs and to elicit primary caregivers’ input on the design functionalities to inform the development of a new mHealth application for supporting home monitoring and preventing recurrent ED and hospital admissions among CMC. Caregivers recognized changes in oxygenation, temperature (fever), heart rate (increased), feeding (intolerance), behavior (e.g. screaming, crying and agitation), seizures, pain, and a more generalized, prescient
Conclusions
Caregivers of CMC are willing to use a mHealth tool, and state that it would be a useful a way to monitor changes in their child’s symptoms and intervene quickly to minimize acute escalations and recurrent ED/hospital admissions. They offered key design features to inform the design and enhance usability of new and practicable mHealth tools for home monitoring of CMC. Results will be used to create a mHealth prototype for home monitoring of CMC and test it for usability among CMC caregivers.
Conflict of interest statement
Authors received no funding and have no financial relationships relevant to this article to disclose. The authors have no other potential conflicts to disclose.
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