• 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.

  • 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.

  • Reflections and Responses: Six Models for Understanding How Families Experience the System of Care for Children with Special Health Care Needs

    In 2009, the Lucile Packard Foundation for Children's Health commissioned a study of the experiences of families in obtaining care for their children with special health care needs. While the multitude of challenges families face is well documented, this study was unique in that it sought to identify patterns of experiences through observations and interviews of a small subset of families. The researchers developed six models of experience. In 2013, stakeholders were systematically interviewed for their responses and reflections on the six models. The findings from this second study strongly support the notion that the models have the potential to contribute to achieving a better understanding of families' experiences, potentially leading to system improvement.

  • A Review of the Literature Pertaining to Family-Centered Care for Children with Special Health Care Needs

    For children with special health care needs, ideal health services must be grounded in "family-centered care," which includes the planning, organization and delivery of health care that involves a partnership between families, patients and providers. Such care meets the physical emotional, developmental, and social needs of children, and also supports the family's relationship with the child's health care providers and recognizes the family's customs and values. This new literature review provides an overview of findings from selected research on family-centered care for CSHCN. It examines what has been learned about the problems families face in having their needs met, and how high-quality family-centered care might be developed and implemented.

  • It Takes A Family: An Analysis of Family Participation in Policymaking for Public Programs Serving Children with Special Health Care Needs in California

    California’s uncoordinated system of care for children with special health care needs often creates significant difficulties for families, yet family voices are generally absent from policymaking. A new report documents the level of family participation in decision-making processes for organizations that influence the health and well-being of their children.

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