Characterizing In-Home Safety Challenges and Strategies for Children With Medical Complexity

OBJECTIVES: Medical advances have allowed more children with medical complexity (CMC) to live at home, but previous research has linked implanted tubes to patient safety events. We aimed to characterize challenges and strategies parents use to deliver their children's tube-related care at home and how parents communicate about their experiences to identify system-level intervention opportunities. METHODS: We conducted a qualitative study using virtual contextual inquiry to asynchronously observe parents through self-submitted photos, text-based messages, or audio recordings with a national sample of English- and Spanish-speaking parents of CMC. Over 1 week, parents responded to twice-daily surveys soliciting messages about their child's tube-related care. Parents were subsequently interviewed to discuss messages. Content analysis characterized parent challenges and strategies employed for safety. RESULTS: We enrolled 21 parents from individual families, received 267 total messages, and completed 18 interviews. Overall, 13% (n = 36) of messages were challenges; 57% (n = 151) depicted strategies to care for CMC at home; and 26% (n = 70) were both. Challenges included supply issues (24%, n = 25), devices not working as intended (22%, n = 23), and irregularities in care experienced as normal (20%, n = 21). Strategies were personalized and creative and included supporting CMC's activities of daily living (63%, n = 139), organization techniques (42%, n = 93), and tube-related preparation (40%, n = 89). Parents often did not share challenges and strategies with their child's care team. CONCLUSIONS: Parents of CMC navigate patient safety challenges during daily tube-related care and create strategies to mitigate safety risks. Challenges at home demand multipronged systemic intervention; findings highlight creative, independent, and resourceful parent-developed strategies.