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For Families and Family Advocates

To create a family-centered health care system we need the families’ voices to be central in the dialogue of defining health and health care quality. The interests of children, adolescents and their families are held at the heart of the Child and Adolescent Health Measurement Initiative (CAHMI) mission to promote a high quality family-centered health care system. The CAHMI wishes to include families both to define and measure the quality of care as well as drive improvements of care. This wish is reflected in two of the core values of the CAHMI:

  • Family empowerment: Families have a need and right to fully engage in ensuring excellence in their children’s health care. They need to know about the quality of health care provided to their children and to be fully engaged in assessing and improving the quality of health care for their children.
  • Family involvement: Families will be involved at every level of identifying, specifying, deploying and communicating information about child and adolescent health care quality.

As patients and their families are the consumers of health care, improvement efforts should be geared towards the needs and requests of the families. In order to ensure that improvements are family focused and family informed, the CAHMI has developed family-reported quality measurements that directly assess families’ experiences with health care. Families are involved in the development process as members on advisory boards and participants in focus groups.

With the resulting data from these quality measurements, family advocates are called to strengthen their personal story with health and health care quality data to drive improvements in policy and practice. The CAHMI developed the Data Resource Center for Child and Adolescent Health (DRC) to provide hands-on, easy to access national, state, and regional data findings from large population-based national surveys. The CAHMI hopes to empower families to take a role in the improvement of child and adolescent health and health care by informing them of gaps that exist in the current quality of health care for children.

The CAHMI encourages families to engage in their child’s health by partnering with their providers to ensure greater quality of care. The CAHMI has developed tools that engage the family in their child’s health, such as the Well Visit Planner (WVP) and the online Promoting Healthy Development Survey (online PHDS).

Cycle of Engagement

Get Involved

  • Fill out CAHMI’s quality measurement surveys that are designed for parents to use
  • Engage in your child’s health care by using the CAHMI’s tools: Well Visit Planner and online Promoting Healthy Development Survey
  • Provide feedback or participate in an advisory group to help identify and develop CAHMI measurements and tools that will be family friendly.
  • Learn more about the Data Resource Center. Discover the quality of health care within your region.
  • Participate in family-centered data-driven advocacy. Visit the Data Resource Center family profile page to strengthen your story by combining it with data.

Resources

  • Using Data from Your State to Advocate for Effective Quality Health Care for Children with Special Health Care Needs. This presentation explains why data is useful, especially in strengthening the family advocates cause, and provides descriptive information about the data from the national surveys that is reported in the Data Resource Center.
  • Creating Transformative Change: Family-Centered Data Tools. This presentation provides an overview of the Patient-Centered Quality Improvement (PCQI) model to argue the case for quality improvement that addresses the needs and desires of the patients. One such Patient-Centered Quality Improvement tool, the online Promoting Healthy Development Survey completed by parents, is described.
  • A Portrait of Adolescents in America 2001. In this report from the Robert Wood Johnson Foundation National Strategic Indicator Surveys, data was gathered from adolescents using items mainly from the Young Adult Health Care Survey developed by the CAHMI. This survey was conducted to learn from teens about their physical, mental and social well-being and the perceptions and behaviors that promote or threaten their health.

Related Efforts & Resources

  • A partner of CAHMI, Family Voices is a national, non-profit, family-led organization that works to achieve quality, family centered, culturally and linguistically competent care for all children and youth, including children and youth with special health care needs and disabilities. Through their national grassworks network, they provide families resources and supports to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care. Visit their site to learn about their work and how you can take action in the promotion of your child’s health.
  • The Family Centered Care Self-Assessment Tool, developed by Family Voices, can be used by families to become aware of if/how the care their children receive aligns with the 10 components of family-centered care. Read this document for detailed information about the tool.
  • Improving Maternal Child Health Programs and Policies so All Children Thrive (IMPACT) is a project of Family Voices that focuses on promoting “a holistic, culturally relevant approach to health and wellness for all families and children including those with special health care needs and disabilities.” Visit their site to learn about their work and for information and resources for families.
  • Bright Futures mission is to “promote and improve the health, education, and well-being of infants, children, adolescents, families, and communities.” Visit their site for educational materials and other resources.
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