Work

Social and economic impacts of pediatric neurovascular surgery: Part 1 a qualitative study of parent experiences

Year: 2025

Type: article

Abstract: INTRODUCTION: Pediatric neurovascular disease can have lasting impacts on quality of life. High direct healthcare costs have been noted, yet indirect costs have not been explored. This qualitative study was part 1 of a series designed to explore the family experience with neurosurgical treatment of neurovascular conditions. METHODS: Parents of children who had neurovascular surgery at our institution (2022-2023) underwent semi-structured interviews. Concepts explored included: access to treatment, financial and emotional impacts, and recovery. RESULTS: 5 of 8 (62.5 %) had emergency surgery, median time from symptoms to diagnosis was 7 (range 1-1095) days and diagnosis to treatment was 1.5 (0.1-365) days. Median distance traveled for treatment was 45 (15-95) miles. Median time taken off work during treatment was 24.5 (0-180) days for mothers and 5 (0-105) days for fathers. 37.5 % reported changes in employment status during or after treatment. Four themes (subthemes) were identified: (1) Decision Making (communication is crucial, cost is not a deterrent, pressure stems from emergency, time is positive), (2) Cost (high impact, income loss, transportation), (3) Emotional Impact (distress, gratitude, trust the process), and (4) Quality of Life After Surgery (difficulty with acceptance, routine adjustment, challenging healthcare coordination, frequent rehab appointments, vision deficiencies and school disruptions were common). DISCUSSION: Neurovascular surgery is associated with social, economic, and emotional impacts on patients and their families. The presurgical period and early recovery period emerged as potential timepoints for intervention such as anticipatory guidance, navigation, and support. Future studies are warranted for quantifying burden and assessing interventions for mitigation.

Source: Journal of the Neurological Sciences

DOI: 10.1016/j.jns.2025.123513

Authors: Sunny Abdelmageed, Rya Muller, Jonathan Scoville, Sandi Lam

Institutions: Northwestern University, Lurie Children's Hospital

Language: English

Topic: Family and Disability Support Research

Subfield: Clinical Psychology

Field: Psychology

Domain: Social Sciences

SDG: Good health and well-being

Open Access status: hybrid

Estimated APC paid: $3,640