Setting Up for Success: Caregiver Perspectives on Emergency Care Plans for Children With Medical Complexity

Providing high-quality emergency care to children with medical complexity (CMC) is a known challenge. Although academic societies have endorsed emergency care plans (ECPs) to mitigate this challenge, they have not been widely adopted and implemented. Our primary aim was to characterize the perspectives of caregivers of CMC on ECPs, including preferred content, format, and implementation.

We conducted an electronic survey of English and Spanish-speaking caregivers of CMC at an urban academic medical center. The survey was designed by an expert panel with feedback from the institution's family advisory council. The survey included 4 Likert Scales, 22 multiple-choice, and 4 open-ended questions. Quantitative data were analyzed with descriptive statistics and a univariate analysis was performed based on whether the respondents had ECPs. We reviewed open-ended responses to identify common themes.

Ninety-eight (21.6%) of 454 eligible caregivers responded to the survey. A majority of respondents cared for children with technology dependence (72.3%) and were English-speaking (80%). Most (73.2%) respondents felt ECPs would be helpful. Detailed health information (ie, list of medical problems, medication list) was rated as the most useful content. The preferred format was in the electronic health record or an online application. There was no significant difference in responses if caregivers had existing ECPs or not.

ECPs are widely supported by caregivers of CMC. Caregivers thought detailed health information was the most useful content, and that plans should be accessed digitally. These findings can inform the adoption and implementation of ECPs for CMC.