200 - Reasons for Emergency Department Use by Families of Children with Spina Bifida: A Pilot Study Using a Framework Analysis of Semi-Structured Interviews with Families and Stakeholders

Poster Number: 200
Publication Number: 200.319

Rachel Alexander, Children's National Medical Center, Fairfax, VA, United States; Qene Mahlet, Children's National Medical Center, Washington, DC, United States; Jacob C. Smith, Children’s National Hospital, Washington, DC, United States; Laura Tiusaba, Childrens National, Washington, DC, United States; Teresa L. Russell, Children's National Hospital, Washington, DC, United States; Christina P. Ho, Children's National Health System, Washington, DC, United States; Hans G. Pohl, Children's National Health System, Washington, DC, United States; Briony K. Varda, Children's National Health System, Washington, DC, United States

Background: Children with Spina Bifida (SB) use the Emergency Department (ED) significantly more than their peers. Although ED use patterns are clear, the reasons why are less well understood.

Objective: We aim to describe, from the patient-caregiver perspective, reasons for ED use by children with SB.

Design/Methods: 673 SB children using services at our institution between 2016-2020 were identified through billing data. Demographic data and average annual ED (aaED) visits were collected. Patients >21 years old and non-English speakers were excluded. Purposeful sampling based on age and degree of past ED use was performed. Additional non-patient stakeholders were identified for interview. An interview guide was developed and iteratively revised. Semi-structured, 30-minute Zoom interviews were performed and analyzed via a qualitative framework analysis adapted from medical decision-making literature. Immersive, open coding was performed among research team members to organize ideas, categorize, and summarize emerging themes.

Results: 13 interviews were performed: 10 patient-parent dyads and 3 stakeholders. Purposeful sampling yielded a heterogeneous sample: patient age ranged between 2–17 years and aaED visits ranged from 0-4.6. Patients were 70% male, 40% Black, 90% non-Hispanic, and 40% publicly insured. Concerns about accessing quality care (specifically experts familiar with SB) was a predominant contextual factor for seeking ED care. The child’s general medical complexity and specific concerns for shunt failure and UTI predominated SB-specific decision-making criteria. Frequent decision maker-related characteristics included emotional burnout, poor self-efficacy in assessing their child’s condition and diminished capability due to factors competing for parents’ attention. Prior negative health care experiences also set expectations favoring ED use. Stakeholders independently reinforced patient-caregiver responses but also consistently discussed how social determinants of health likely impacted recurrent ED use. Conclusion(s): The decision to use the ED is multi-dimensional but can be organized into decision maker-related criteria, SB condition-specific criteria, and contextual factors. By establishing an interview guide and analytic framework, this pilot project may be expanded to include additional families and stakeholders, including non-English speakers.
Rachel Alexander CVRachel Alexander_2022.pdf