family caregivers

care recipients

caregiver depression

caregiver burden

Academic pediatrics

<h2>Abstract</h2><h3>Objective</h3> To examine the association between care coordination experiences of family caregivers of children with medical complexity (CMC) and caregivers' health-related quality of life (HR-QOL). <h3>Methods</h3> From July 2018 to July 2019, family caregivers of CMC completed an electronic survey (n = 136) at the time of initial contact with a regional complex care medical home. Information on caregiver HR-QOL and receipt of care coordination services were assessed using the Center for Disease Control's HR-QOL-14 measure and Family Experiences of Care Coordination questionnaire, respectively. Negative binomial regression, adjusted for caregiver and child characteristics, examined associations between caregiver HR-QOL and caregiver experiences of care coordination. <h3>Results</h3> In the 30 days prior to initial contact, CMC caregivers reported a median of 3.5 mentally unhealthy days, 2 days felt depressed, 7 days felt anxious, and 16 days with insufficient sleep. Caregivers who had a knowledgeable, supportive care coordinator who advocates for their child reported significantly fewer days mentally unhealthy (incidence rate ratio [IRR], 0.46; 95% confidence interval [CI], 0.22–0.95), depressed (IRR, 0.44; 95% CI, 0.21–0.91), or anxious (IRR, 0.5; 95% CI, 0.29–0.85). Having a shared care plan was associated with significantly fewer days mentally unhealthy (IRR, 0.46; 95% CI, 0.23–0.93) or anxious (IRR, 0.53; 95% CI, 0.31–0.92). Having a written visit summary with appropriate content was associated with fewer days of insufficient sleep (IRR, 0.63; 95% CI, 0.43–0.93). <h3>Conclusions</h3> CMC family caregivers report experiencing mentally unhealthy days and negative mental symptom days. The experience of specific care coordination activities was associated with higher caregiver mental HR-QOL.

Family Caregivers of Children With Medical Complexity: Health-Related Quality of Life and Experiences of Care Coordination