Caregiver Health Information-Seeking Behavior During Pandemics, Disasters, and Emergencies Within Pediatric Advocacy and Health Care Networks

OBJECTIVES: Many caregivers of children face significant challenges accessing reliable health information during pandemics, disasters, and emergencies, which exacerbates health disparities. This study aimed to understand caregivers' information-seeking behaviors during emergencies, pandemics/disasters and explore their preferences to improve information dissemination during such events. METHODS: An explanatory sequential mixed-methods approach was used to examine caregivers' information-seeking behaviors during pandemics, large-scale disasters, and/or individual medical emergencies. Recruitment (1/1/24 to 6/30/24) was through the Pediatric Pandemic Network (PPN), EMSC Family Advocacy Network (FAN), and Family Voices Affiliate Organizations (FVAOs). A 21-item survey assessed time spent seeking information, sources used, preferred sources, and barriers during past disasters and emergencies. A subset of respondents were invited to complete a qualitative phase involving semistructured interviews exploring caregivers' personal experiences navigating emergency situations and experience during COVID involving the children in their care. Interviews were recorded, transcribed, and inductive qualitative coding processes were followed iteratively until no new emerging themes, codes, nor discrepancies arose. RESULTS: A total of 285 responses where received to the quantitative survey (144 male, 138 female; 48 rural; 33 states; 88% with at least one child with special health care needs) with 73 screened and 40 completing interviews. Caregivers spent an average of 3.38 hours/week seeking health information. The most common sources were professional and institutional sources (relational) (30.2%) and personal and social networks (relational) (29.6%). A significant gap exists between current usage and preferred sources, particularly for professional and institutional sources (asynchronous) (+45.7%) and media and online learning sources (online relational) (+55.4%). Availability (13.0%, 10.8%) and cost (14.5%, 10.6%) were primary barriers for personal and professional relational sources, respectively. In contrast, those using the most preferred resources report fewer barriers: availability (4.9%), cost (5.6%), time (4.0%), and internet access (2.3%). CONCLUSION: During emergencies, pandemic, and disasters caregivers from established networks with a high representation of children with special health care needs often depend on real time, relational support for immediate needs. These caregivers strongly prefer professional and institutional sources (asynchronous) and media and online learning sources (online relational) for flexibility and reliability. A hybrid approach combining real-time professional access with asynchronous resources can more effectively meet these caregivers' diverse needs.