Transition readiness, self-efficacy, health utilization and medication adherence of youth with chronic conditions as predictors of caregiver burden (2015)

Undergraduates: Karina Javalkar, Meredith Johnson, Jessica Cuttance

Faculty Advisor: Maria Ferris
Department: Health Policy & Management

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Objective: To characterize the burden among caregivers of youth with chronic conditions who attended therapeutic camp.

Design/Methods: Parents responded to web-based surveys that measured caregiver burden (Zarit 1980) and their child's health services utilization (inpatient and emergency room visits in the past 12 months). Their youth responded to surveys measuring health care transition readiness, self-efficacy (Iannotti 2009), and medication adherence (Morisky 1986). Linear regressions were conducted with each predictor, controlling for the child's age, race, gender, and diagnosis.

Results: We enrolled 157 caregiver-youth pairs. 94% of caregivers were mothers. The youth's characteristics were: 53% males and 76% Whites with a mean age of 12.19 (¿¿2.54) and with many different chronic conditions. Caregiver burden was significantly different based on diagnoses, with spina bifida having the highest burden and sickle cell the lowest.

There was a significant direct relationship between caregiver burden and youth's ER visits and hospitalizations. Caregivers whose youth had greater transition readiness and self-efficacy had lower levels of burden. Number of medications, but not but not adherence, predicted caregiver burden.

Conclusions: Caregiver burden varies by diagnosis. Transition readiness, self-efficacy and health services utilization were significant predictors of caregiver burden, while the child's medication adherence was not. Further study is underway.