Tracking Caregiver Strain Across Intervention Stages: A Data-Driven Approach to Emotional and Logistical Burden in Autism Support

Abstract

This project analyzed caregiver burden using longitudinal data from the Caregiver Strain Questionnaire (CSQ), collected across seven post-discharge timepoints as part of the Coordinated Care Team at HANDS in Autism®. Data from REDCap was cleaned and preprocessed using Python, then visualized with Power BI to uncover trends in objective, internalized, and externalized strain. Results showed peak caregiver burden during the preadmission and early post-discharge phases, with gradual improvement over time. However, emotional strain persisted longer than practical burdens. Visual dashboards allowed for real-time comparison of severity types and helped identify intervention windows. The project emphasized the value of data-driven tools in understanding healthcare challenges and reinforced the need for early support strategies, long-term emotional care, and improved caregiver retention in follow-up studies.