Caregiver Perspectives on Implementation of Discharge Plans for Children With Medical Complexity

The quality of discharge processes impacts adverse outcomes post hospitalization for children with medical complexity (CMC). Perspectives of caregivers at risk for communication challenges (eg, non-English speakers, those with limited health literacy, immigrants) on understandability and feasibility of discharge instructions for CMC are understudied. Our objective was to explore their perspectives on barriers and facilitators to comprehension and implementation of discharge instructions for CMC.

In this qualitative, descriptive study, we used maximum variation sampling to enroll caregivers of CMC (N = 40) discharged from acute or intensive care units of 2 urban hospitals. English- and Spanish-speaking caregivers of CMC (Pediatric Medical Complexity Algorithm) aged 18 years or older and discharged on 1 or more daily medications were eligible. We conducted semistructured interviews, audio-recorded and transcribed interviews, and performed content analysis. Two team members applied codes from a codebook (developed based on prior literature and preliminary analyses) and identified emerging themes.

Equal numbers of participants spoke English and Spanish (n = 20 per language) and were recruited from each hospital (n = 20 per hospital). Half (47.5%) had low health literacy; 85% were of non-US birth. Themes emerged across 4 categories: (1) clinician and medication access; (2) patient- and family-centered approaches to discharge planning and education; (3) caregiver prior experience; and (4) resources and support systems.

Caregivers identified barriers and facilitators affecting discharge plan comprehension and implementation. Optimizing postdischarge care for CMC is complex and requires family-centered, language-concordant, and health literacy-informed processes. Future interventions should focus on systems-level changes that enhance access and account for caregiver perspectives.