478 - Medication Delivery, Caregiving Network, and Caregiving Benefit and Stress among Child with Medical Complexity

Publication Number: 478.5830

Casey O'Hare, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Nicole Werner, Indiana University School of Public Health Bloomington, Bloomington, IN, United States; Makenzie B. Morgen, UW-Health, Madison, WI, United States; Sophie J. Kooiman, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; James A. Feinstein, University of Colorado School of Medicine, Englewood, CO, United States; Michelle Chui, University of Wisconsin School of Pharmacy, Madison, WI, United States; Gemma Warner, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Anna Jolliff, Indiana University Bloomington, Seattle, WA, United States; Brittany Storhoff, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Kristan Sodergren, UWMSPH, Madison, WI, United States; Danielle Gerber, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Michelle M.. Kelly, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Jens Eickhoff, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Ryan Coller, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States

Background: Care for children with medical complexity (CMC) is often distributed across multiple caregivers (“networks”); however, limited research describes how these networks work or their influence on child and caregiver health.

Objective: We aimed to test the hypothesis that caregiving networks with greater collective efficacy are associated with greater benefits and lower stress for primary caregivers.

Design/Methods: This secondary analysis studied baseline data collected in the randomized clinical trial of Meds@HOME, an intervention to improve caregiving network medication delivery for CMC. Trial inclusion criteria were ≥2 Complex Chronic Conditions (CCC) and ≥1 high-risk medication prescription. Enrollment surveys queried child and caregiver demographics and medication delivery (people, locations, and numbers of medications delivered, adherence to refills and medications [ARMS] scale). Perceived Collective Efficacy, a 4-item scale with 5-point Likert responses, used summed scores (range 4-20) to reflect caregiving networks’ self-efficacy. Outcomes were University of Washington Caregiver Benefit and Stress Scales; dichotomized as above or below the standardized population mean (T-score=50). Bivariate and multivariate logistic regression models identified associations with above-average benefit or stress for primary caregivers, with adjustment variables having statistically significant bivariate associations with benefit or stress scores.

Results: Among n=168 trial participants, mean (range) network size was 2.7 (1-9). Most caregivers had below-average benefit (57%) and above average stress (54%). CMC had median (IQR) 4 (3-7) scheduled medications, and 38% had ≥4 CCC (Tables 1 and 2). In unadjusted models, several demographic and caregiving measures were associated with caregiver benefit and stress (Table 3). For example, a professional in-home caregiver (vs none) was associated with above-average benefit and stress, OR (95% CI) 2.91 (1.47-5.74) and 3.20 (1.56-6.55) respectively. In adjusted models, higher ARMS (greater adherence) and collective efficacy were associated with above-average benefit and below-average stress. For each additional point of collective efficacy, aOR (95% CI) of above-average benefit was 1.27 (1.01-1.58) and above-average stress was 0.68 (0.54-0.85). Professional caregivers remained associated with higher benefit.

Conclusion(s): Networks play an important role in perceived stress and benefits of caregiving. Future research should determine whether network efficacy impacts child and caregiver health, as well as the interventions that best support network efficacy.

Table 1. Characteristics of Caregivers and Children in the Meds@Home Trial


Table 2. Medication Delivery and Caregiving Network Characteristics
1 Caregiving network collective efficacy is a summed scale score of 4 items have 5-point Likert response (range 4-20), with higher scores reflecting greater collective efficacy

2 Adherence to refills and medications is a summed scale score of 12 items having 4-point Likert responses (range 12-48), with higher scores reflecting greater adherence.

Table 3. Associations with Caregiver Benefit and Stress
1 Models adjusted for child insurance status, caregiver education, household income, number of complex chronic conditions, number of emergency department visits in the year prior to study enrollment (for table clarity, data not shown)