Clinical Assistant Professor University of Washington Seattle, Washington, United States
Background: Communication and sensory differences are present for many children with developmental disabilities and impact their experience within the highly stimulating emergency department (ED). Accommodating the communication and sensory needs of each child is critical for providing appropriate care, and caregivers are uniquely positioned to offer insights on addressing these needs. This qualitative study explored caregivers’ expertise regarding their children’s communication and sensory experience in the ED, in order to support collaboration and improve care. Objective: To assess, from the caregivers’ perspective, how to effectively convey information about children’s alternative communication and sensory needs to ED providers. Design/Methods: This qualitative research study utilized focus groups and individual interview with thematic analysis. Seattle Children’s Clinical Data Repository identified a population of patients within the neurodevelopmental department aged 6-17, with primary language English, who had visited the ED within the previous year (excluding deceased patients or families requesting no research). Out of 566 patients who met selection criteria, 160 caregivers of these patients were invited following sequential dataset MRN number-based ordering. 10% of these caregivers responded with initial interest, with 5% (8) ultimately enrolled for focus group (7) and individual interview (1). Eligibility required comfort with an English language focus group, legal guardian status, a Zoom-supporting device, and caregiver report of child communication or sensory difference. Thematic analysis was conducted on transcript data by two developmental pediatric fellows. Results: Patient ages ranged from 10-17, which skewed older than age of inclusion criteria. Child diagnoses included ASD, ADHD, OCD, anxiety, seizures, and a genetic syndrome. Race and ethnicity identification included 7 white, non-Hispanic and 1 white, Hispanic. Overarching themes included provider and caregiver disconnect in understanding the child, provider gaps in accessing information, use of the electronic medical record system, insufficient mental health support, and ED system difficulties.
Conclusion(s): This preliminary qualitative study evaluating insights from caregivers identified key barriers in caring for children with alternative communication and sensory needs in the ED setting and presented beneficial considerations to support care. Further studies, including those addressing more diverse populations and younger school-age patient families, are needed to better understand effective ways to care for these children in the ED setting.
