Family Well-Being

Families of children with medical complexity (CMC) experience stressors that affect their quality of life, from managing their child’s intensive health needs round-the-clock to navigating a complex network of providers, payers and community resources. They can feel uncertain, fearful and overwhelmed. Fifty-four percent of families had a family member stop working to care for the child*. Little has been known about how comprehensive care management impacts family health-related quality of life.

The CARE Award assessed the effect of improved care management on measures of parent and family quality of life. Results show that family lives are positively impacted by care coordination through convenient and personalized access to the child’s health care team, enhanced goal setting and care planning that improves the family’s sense of well-being, and improved family-provider partnerships and child outcomes.

*Kuo DZ, Cohen E, Agrawal R, Berry JG, Casey PH. A National Profile of Caregiver Challenges of More-Complex Children with Special Health Care Needs. Archives of pediatrics & adolescent medicine. 2011;165(11):1020-1026. doi:10.1001/archpediatrics. 2011.172.


The Importance of Care Coordination

This short, self-paced course describes how care coordination helps patients and families receive comprehensive, well-organized care through sharing of information across all settings.


Launch Module

A Focus on Reducing Caregiver Stress

David Bergman, M.D., medical director for the Complex Primary Care Clinic at Lucile Packard Children's Hospital Stanford and the CARE Award, sees the sacrifice these families make to care for their children. Implementing care coordination services help families effectively use resources to avoid emergency department visits and hospitalizations. “The goal was to keep the families at the center of everything we did. We needed to help them navigate their care map more efficiently, with less stress.”

“It had such an impact on families in terms of time, money and worry that they put into these kids.”


Related resources

White Paper

Reflections on Care Coordination

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White Paper

Invoking the Power of Family Partnerships

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White Paper

CARE Award Metrics: Reflections and Rankings

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CARE Webinar Series

Optimal Care Design

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CARE Webinar Series

Family Partners for Better Care

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Poster

Care Program Improves Family Health-Related Quality of Life

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