Family Driven Quality Measurement to Promote Family-Centered Care
A project to undertake reliability and validity testing of a tool to measure the implementation of family-centered care
Winter, 2013: Over 890 family responses to the Family-Centered Care Assessment online questionnaire were received from every state and DC and a good proportion of the respondents identify as of Hispanic and/or of color. The analysis of these responses is yielding excellent results, which will allow us to reduce the number of questions to a 15 – 20 questions, to form a reliable measurement tool, which will be ready by early June, 2013.
Fall, 2012: The Family-Centered Care Assessment for Families (FCCA-F) has been tested in diverse family focus groups in New Mexico, California and New Jersey and based on this input from families has been simplified and shortened. The revised questionnaire has been prepared in a web based pilot survey format that is now ready for testing by families in every state. The survey questionnaire will be disseminated to families through our family leader organizations – by web, listserve and social media – and also through the national Family Voices website and social media. The resulting family responses will be analyzed for reliability and compared with other survey questions for validity. A tested and revised questionnaire that will be widely available to help providers and programs look at their implementation of family-centered care is expected to be ready by late winter, 2013. Exploration is also underway with AAP regarding how to undertake the same testing and revision protocol for the Family Centered Care Provider Tool. Both the family and the provider tools in their original format have been widely requested, and used by a number of organizations including children's hospitals, medical home projects and research projects.
Over 10 million children in the United States have a special health care need (CSHCN), representing 1 in 5 of all US households. CSHCN account for 40% of children’s medical expenditures. Research points to evidence that when families of all cultures and their providers understand and implement elements of family-centered care, the quality and safety of health care improves, costs decrease, and provider and patient satisfaction increases.
Implementation of family-centered care requires an understanding by both families and providers of how to translate basic elements of family-centered care into actions and activities in practice and experiences.
However, there are currently no tools to effectively measure many elements of family-centered care. Families are key partners in articulating what constitutes family-centered care and need to be directly involved in the development of future measures. Validating the Family Voices Family-Centered Care Self Assessment tool as an instrument to measure the implementation of family-centered care, and incorporating the use of such a tool in multiple settings, is paramount in truly adopting family-centered care in practice.
Development of the Tools:
Family Voices is a national family-led organization with an extensive grassroots membership of families, family-led organizations and professional partners. Through a cooperative agreement with MCHB, Family Voices provides technical assistance to the family-led Family-to-Family Health Information Centers serving families of CYSHCN in every state.
The Family-Centered Care Self Assessment Tools were developed by Family Voices with the visionary guidance of the Maternal and Child Health Bureau, Division of Services for Children with Special Health Care Needs through in-person meetings, conference calls and interviews with numerous family leaders and providers during 2007 and 2008. Created fundamentally by families themselves, the Family-Centered Care Self Assessment Tools focus on areas that families have identified as important in quality, including areas that go beyond topics addressed in current tools such as the Medical Home Index, CAHPS tools, the Initial Core Set of Child Healthcare Quality Measures and the National Surveys of Children’s Health and Children with Special Health Care Needs.
Purpose and Significance of the Proposed Project:
The purpose of the Family Driven Quality Measurement to Promote Family-Centered Care project is to test the psychometric soundness of the Family Version of the Family-Centered Care Self-Assessment Tools and to revise and validate the tool so that it can be widely disseminated and used by providers and families.
Products that will result from this project are a tool with a validated set of measures based on concepts identified and articulated by families themselves, and families with new knowledge about measure development. The product will include a valid way to score a practice or a setting on the elements of family-centered care.
Project Leadership through Family/Professional Partnerships
The staffing and structure of the proposed project will include a collaborative team of family advocates and university faculty. A Project Coordinator will carryout the research including logistical support and coordination of project activities such as communication with sites and Advisory Group, preparation and coordination of project communications and materials and development of project documents.
Objectives of the Project:
- Develop and implement a scientifically sound protocol to test questions from the Family-Centered Care Self Assessment Family Tool in order to establish the psychometric soundness of the questions, including their soundness for families from varied racial, ethnic, and socio-economic backgrounds
- Revise the tool based on the findings of tests and provide revised tools that are useful to both families and professionals for measuring elements of family-centered care;
- Disseminate the psychometrically sound, revised tool widely to family and professional audiences; promote the use of the tool in multiple settings; promote use/publication by multiple agencies;
- Promote and demonstrate the importance of family participation in quality measurement around children’s health;
- Help family leaders to develop skills to participate in quality improvement activities; demonstrate rigorous partnership between family leaders and researchers both staffing and advising the project.
The initial phase of the project, including preliminary revision of the current tool, planning and carrying out of structured feedback through interviews and focus groups, pilot testing in the field and revisions based on psychometric analysis is expected to take 12 months, beginning in the fall of 2011.