Partnering With Patient Families to Better Care for Children With Medical Complexity

Partnering With Patient Families to Better Care for Children With Medical Complexity

Family members are crucial—although often underutilized—partners in their child's health care. Here's how hospitals are empowering them as partners in their child's care.

Get more information about the CARE Award

The CARE Award's participating institutions presented informational webinars to share what they learned. Leaders from Children's Hospital Colorado in Aurora, Colorado, and Children's National Health System in Washington, D.C., gathered to discuss findings related to improving care delivery systems for CMC through better care coordination.

This is the fourth installment in a series on the CARE Award, "Coordinating All Resources Effectively." The CARE Award is a landmark national study aimed at improving quality outcomes and reducing the cost of care for children with medical complexity (CMC) enrolled in Medicaid. Funded by the Center for Medicare & Medicaid Innovation, CARE is designed to test the concept of a new care delivery system supported by new payment models specific to CMC. Under the CARE Award, the Children's Hospital Association partnered with 10 of the nation's leading children's hospitals, 8 state Medicaid programs and Medicaid managed care organizations (MCOs,) more than 40 primary care practice sites and more than 8,000 children and their families.

As the most constant influence on the lives of children, family members are crucial partners in their child's health care. Though most health care providers strive to provide family-centered care for their patients, a primary goal of the CARE Award is to empower families as full participants in the care of CMC.

"Most of us feel and believe we practice family-centered care and we have an understanding of families and take that into consideration," says Carl Cooley, M.D., clinical professor of pediatrics at the Audrey and Theodor Geisel School of Medicine at Dartmouth, and a CARE Award faculty member. "But the CARE Award really wanted to take this to a deeper, more meaningful level and to fully engage families from the beginning."

To accomplish this, the CARE Award aims to:

  • Build family partnerships around the care of individual children. This includes family-identified dynamic care teams and care and access plans with the patients and their families as the focal point.
  • Improve care for all through family partnerships. Families have unique knowledge and perspective on how health care systems really work—they need to have a place at the table when changes are being discussed and implemented.
  • Emphasize the principles of family-centered care. To do this requires buy-in system wide. These principles should permeate the organizational culture.


Parent Navigators give Children's National a head start

Children's National established its Parent Navigator Program in 2009 to provide peer-to-peer support for families of children with chronic medical conditions and special health care needs. The program now employs 6 full-time parent navigators who help families traverse the landscape of hospital and community services, communicate more effectively with care providers and understand their educational rights and responsibilities.

With several years of experience as a foundation, the Parent Navigator Program gave Children's National a solid base upon which to build the CARE Award's vision of family-centered care. "We benefited from having the Parent Navigator program already in place—the parents were already recognized as active and respected partners in our care team," says Mark Weissman, M.D., chief of general pediatrics and community health at Children's National. "They really made a big difference to give us a jump start in defining and developing strategies and interventions."

The family voice: powerful and willing

Even with a family partnership in place, it's not easy to shift the health care system paradigm toward family-centered care—systems traditionally are not set up that way, according to Weissman. But he says the family viewpoint can be a very powerful force for change if you ask for it—and listen to it.

As the parent of a medically complex child, TjaMeika Davenport says families are eager to help. "Whatever we can do as family partners to help providers help us care for our loved ones, we're really up to that task," says Davenport, a parent navigator at Children's National. "We're really excited about this opportunity with the CARE Award."

Addressing social determinants of health for CMC

CMC often face challenges beyond their medical diagnoses. Frequently, social factors also play a significant role in their health. Children's Hospital Colorado sought to address these factors by enlisting families as partners in the screening and resolution of social determinants of health for CMC.

An interdisciplinary team of care professionals at Children's Colorado developed a brief (one page) but broad screening tool that could be integrated into clinical settings and inform the patient's care plan. The questionnaire addresses topics such as food insecurity, housing instability and barriers to health care. It also contains more "sensitive" topics, including exposure to domestic violence and substance abuse by a caregiver.

According to David Keller, broaching these topics can be uncomfortable at first, but it's crucial to improved outcomes for these children. "We saw a number of cases where people had perfectly normal questionnaires but then felt comfortable opening up and discussing with a provider or nurse something that was going on in the home where we could help ensure the safety of the child," says Keller, M.D., vice chair for clinical affairs and clinical transformation at Children's Colorado. "We think it's important to include those questions on the questionnaire."

Integrating social information into EHR is crucial

Once the family completes the screening questionnaire, they review it together with their care provider. From there, the information is integrated into the patient's EHR, triggering a notification to the rest of the care team. This step is critical, ensuring everyone is on the same page.

"It was important to us from the beginning that this screening tool be integrated into the EHR and this information be visible to everyone on the care team," says Shelby Chapman, director of patient-family experience at Children's Colorado. "It helps build the relationship and trust (with patient families) so our providers are more aware of what's going on—not just with the medical complexity of their patients but on the social side as well."

To date, Children's Colorado has conducted more than 2,600 screening questionnaires. More than 40 percent of those screened identified a social need, with more than 60 percent of those identifying multiple needs.

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