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August 2020 List
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Citation List Month
August 2020 List
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<a href="http://doi.org/10.1016/j.acap.2020.06.014" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.acap.2020.06.014</a>
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Title
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Family Caregivers of Children with Medical Complexity: Health-Related Quality of Life and Experiences of Care Coordination
Publisher
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Academic Pediatrics
Date
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2020
Subject
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care coordination; caregiver emotional well-being; caregiver health-related quality of life; Children with medical complexity
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Yu J A; Henderson C; Cook S; Ray K
Description
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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.
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<a href="http://doi.org/10.1016/j.acap.2020.06.014" target="_blank" rel="noreferrer noopener">10.1016/j.acap.2020.06.014</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Academic Pediatrics
August 2020 List
Care coordination
caregiver emotional well-being
caregiver health-related quality of life
Children With Medical Complexity
Cook S
Henderson C
Ray K
Yu J A