Caregiver Perspectives on Preventing Future Hospitalizations for Children With Medical Complexity

BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) are hospitalized frequently. Caregivers play a critical role in mitigating hospitalization risk. This study aimed to examine the association between caregiver acute illness self-efficacy and the perception of future hospitalization preventability. METHODS: Two survey periods from the Family CMC Innovation Research Cohort With Longitudinal Evaluation, a 9-site, prospective, and longitudinal cohort study following 718 caregiver/CMC dyads, were used in this analysis. Caregivers responded to 2 scaled questions assessing their self-efficacy in treating their child's acute illness. The study outcome was the presence or absence of the perception that the child's future hospitalizations could be prevented. Associations between caregiver acute illness self-efficacy and perceived future hospitalization preventability were examined using logistic regression clustered by site and adjusted for sociodemographic and clinical confounders. Caregivers also rated the preventability of hospitalization for specific conditions. RESULTS: Among 513 participants with exposure and outcome data, most (73.1%) caregivers perceived that future hospitalizations are preventable. Caregivers with high acute illness self-efficacy were an adjusted odds ratio 2.77 (95% CI, 1.13-6.83) times more likely than caregivers with low self-efficacy to perceive that future hospitalizations are preventable. Most families perceived nearly all queried conditions were preventable more than 50% of the time. Over 70% of caregivers perceived that the majority of hospitalizations for growth, respiratory illness, constipation, and pain were preventable. CONCLUSIONS: Nearly three-quarters of caregivers in this national multisite study perceived that future hospitalizations could be prevented for CMC. Designing interventions focused on self-efficacy for treating acute illness, and the identified conditions may be productive for future research directions.