455 - Be Hurricane Ready: A Virtual Community of Practice Building Resilience of Caregivers of CYSHCN

Publication Number: 455.3804

Abigail Bourland, Baylor College of Medicine, Houston, TX, United States; Brent Kaziny, Baylor College of Medicine, Houston, TX, United States; Charu J. Sehgal, Baylor College of Medicine, Houston, TX, United States; Sutapa Khatua, Texas Children's Hospital, Katy, TX, United States; Shelley Kumar, Baylor College of Medicine, Houston, TX, United States; Jennifer Benjamin, Baylor College of Medicine, Houston, TX, United States

Background: Children and youth with special health care needs (CYSHCN) are at life threatening risk during hurricanes. Our baseline survey of 220 caregivers identified that families are ill-prepared, lack confidence and are unaware of resources. Caregivers of CYSHCN have an incessant burden of losing their child during disasters. Our aim is to enable caregiver resilience for disasters through a virtual Community of Practice (vCoP) using a patient-centered intervention.

Objective: To evaluate the effectiveness of vCoP to improve disaster preparedness of caregivers of CYSHCN using the Value Cycle Framework (VCF).

Design/Methods: Our vCoP included parents of CYSHCN and medical providers collaborating to foster caregiver resilience. Our interventions included asynchronous video-based module ‘Be Hurricane Ready Program’ with accompanying survey and synchronous parent support groups. Parents were recruited to the vCoP during clinic visits and also through video announcements, infographs, Facebook parent group and electronic medical record (EMR) notifications via MyChart. vCoP members met virtually bi-weekly for peer support meetings to share experiences and insights, and also to interact with and support each other. Meetings were recorded to derive take-home points which was made accessible to all members. We used the Value Cycle (VC) framework (Fig 1) for evaluation.

Results: For VC1 (Productive Activities) we enrolled 197 patient families, with mean age of 8.7 yrs (8 days-21.5yrs). 100% families had MyChart access. We achieved 88 survey responses, recruiting 112 Facebook parent group members. We conducted 7 virtual peer support meetings attended by a total of 50 caregivers. For VC2 (Robust Resources) we developed a hurricane preparedness intervention with 6 animation videos generating 526 views. Most families rated videos favorably (Fig 2). Parents provided valuable insights and practical tips for implementing 6-steps (Fig 3). In VC3 (Promising Practices) we developed an EMR-generated Electronic Information Form (EIF) for patients and developed statewide parent education resources. Parent volunteers demonstrated personal preparedness and highlighted state-funded resources available to families (Fig 3). VC4 (Realized Value) showed that EIF improved access to pertinent information during disasters. Parents developed resources for peers to gain familiarity with resources.

Conclusion(s): Our vCoP has the potential to enhance caregiver resilience to natural disasters and has proven beneficial for CYSHCN families. Our future efforts will be focused on recruiting families and disseminating our efforts nationally.

Figure 1
Value creation framework.

Figure 2
Summary of results from Be Hurricane Ready Program.

Figure 3
Be Hurricane Ready Program steps and parent insights from peer support group meetings.