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

Title

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

Creator

Yu J A; Henderson C; Cook S; Ray K

Publisher

Academic Pediatrics

Date

2020

Subject

care coordination; caregiver emotional well-being; caregiver health-related quality of life; Children with medical complexity

Description

OBJECTIVE: 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). METHODS: 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 CDC 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. RESULTS: 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). CONCLUSIONS: 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.

Rights

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Citation List Month

August 2020 List

Collection

Citation

Yu J A; Henderson C; Cook S; Ray K, “Family Caregivers of Children with Medical Complexity: Health-Related Quality of Life and Experiences of Care Coordination,” Pediatric Palliative Care Library, accessed January 17, 2022, https://pedpalascnetlibrary.omeka.net/items/show/17187.

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