• Insights

    Turning Stumbling Blocks into Stepping Stones

    Ann Cirimele knows from personal experience how hard it is to navigate the health care system as a parent of a child with special health care needs. As the executive director of the Family Resource Network in Stockton, she’s helping families in rural California through the complexities of the system of care while also working with other local agencies to improve that system.

  • Research & Reports

    Project Leadership: Effecting Change, One Parent at a Time

    Families of children with special health care needs have real-world experience that could help make health care policies more family-centered and culturally competent. However, many lack the training and confidence to make their voices heard. Project Leadership, operated by Family Voices of California, offers a comprehensive training curriculum and mentoring program that prepares families to engage in public policy advocacy.

  • Research & Reports

    In Their Own Words: Improving the Care Experience of Families with Children with Special Health Care Needs

    Straight talk from 52 parents highlights the limitations of the current system of care for children with special health care needs and their families. A new report summarizes findings from 10 focus groups in which family members discussed what their lives are like, how well their families’ needs are being met, and how the health care system could be improved. The report describes four themes that emerged, and offers dozens of direct heartfelt quotes from focus group participants.

  • Insights

    Transition to Adult Care: What’s Age Got to Do with It?

    As children with chronic medical problems approach adulthood, pediatricians expect their maturing patients to transition to adult health care. However, that process does not always go smoothly. In a new article, Edward L. Schor, MD, proposes a novel form of collaboration between physicians, based on the patient’s condition rather than age.

  • Research & Reports

    Children's Health Programs in California: Promoting a Lifetime of Health and Well-Being

    As the "May revise" of the state budget gets under way, the California Budget and Policy Center has released a report on the size and scope of the state's public health care coverage and programs for children. The study, funded by the Lucile Packard Foundation for Children's Health, also notes key opportunities and challenges the state faces in promoting children's health. A companion piece provides a timeline of major policy choices made in the past several years that have shaped the state's health system for children.

  • Journal Articles

    Managing Chronic Illness: How Health Care Providers Can Help Families Help Themselves

    Increasing numbers of children with complex medical conditions are living at home. An upcoming article in the May 2015 edition of Pediatrics provides insight into how pediatric practices can offer “self-management” supports to increase families’ skills and confidence in coping with chronic conditions on a daily basis.

  • Insights

    Personal Advocacy: Why Families Always Will Be Their Child's Care Coordinator

    Pediatric care coordination is more talked about than done, given the challenge of providing “a patient- and family-centered, assessment-driven, team-based activity designed to meet the needs of children and youth while enhancing the caregiving capabilities of families.” Very ambitious. It’s not surprising then that families, who bear the brunt of absent or failed efforts to coordinate care, find it necessary to step in as the principal care coordinator. Here are some ideas of how to support them.

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