The Family-Centered Care Assessment is a tool developed by the Family Voices NCFPP to help providers measure the family-centeredness of health care services.
Family-centered care (FCC) is an approach to the planning, delivery, and evaluation of health care services that is based on a strong, effective, and respectful partnership between the family and the provider. FCC for children with special health care needs is associated with improved health and well-being, improved satisfaction, greater efficiency, improved access, better communication, better transition services, and other positive outcomes.
While FCC is widely considered the standard of care for CSHCN, there has been no standard for measuring whether the care that families experience honors their strengths, cultures, traditions and expertise, values their roles as decision makers, refers them to community, and or/educational resources and accomplishes other important elements of family-centered care. With funding from the Maternal and Child Health Bureau, Family Voices has worked with families and partners to develop the Family-Centered Care Assessment (FCCA) tool to articulate and measure what constitutes family-centered care.
The FCCA is a quality measurement questionnaire developed through an extensive process of in-person meetings, conference calls, and interviews with expert family leaders and health care providers. The questions were revised and tested through a rigorous research process that included multiple family focus groups and a national survey of 796 family respondents. The resulting 24 quality-measurement questions were found to be psychometrically sound, with documented high reliability and evidence of empirical validity. This new measure expands areas of quality measurement to important new content areas in decision-making interactions, family support, community services, and cultural competence.
The FCCA, released in 2014, was based on an older set of unvalidated tools called the Family-Centered Care SELF-Assessments. The FCCA is available by request only; the self-assessments may be downloaded (Family Tool, Provider Tool, User Guide) or ordered in booklet form from the Family Voices website.
Feb 2015: Phase II of the FCCA collaboration between Family Voices and the AAP will focus on using the FCCA as a tool for quality improvement, and improving performance on key measures in the FCCA that were found to present a particular challenge to physicians participating in Phase I of the project.
Dec 2014: The final report for the FCCA joint project with Family Voices and the AAP has been released. Pilot participants found the FCCA easy to administer and were confident using the questionnaire, but indicated a need for additional support in interpreting their results. Phase II of the project is planned to start in spring 2015.
May 2014: A joint project of Family Voices and the American Academy of Pediatrics is underway to evaluate how pediatricians use the FCCA to improve family-centeredness of their care.
Jan 2014: The FCCA was released; it has been reduced to 24 questions and displays excellent psychometric properties. We are now accepting requests to use the new tool.
Nov 2012 - Jan 2013: Over 890 family responses to the Family-Centered Care Assessment online survey were received from every state and Washington DC, providing a high quality dataset for validation of the questionnaire.
Fall 2012: The self-assessment was simplified and shortened, and renamed the Family-Centered Care Assessment (FCCA). It was tested in diverse family focus groups in New Mexico, California and New Jersey and further revised based on this input.
Nov 2011: The validation project for the Family-Centered Care Self-Assessment was initiated.
Early 2009: The Family-Centered Care Self-Assessment was released in two versions, one for families and one for providers.
June 2008: Drafts of the Family-Centered Care Self-Assessment Tools were presented to an expert panel of family leaders. The final revision of the tools was begun based on feedback from this group.
Sept 2006: Family Voices, with support from the American Academy of Pediatrics, convened an expert panel of family leaders and professionals to discuss family-centered care. The panel recognized the need for a tool to measure family-centered care to anchor research and quality improvement efforts.
Journal Article: Psychometric Evaluation of a Consumer-Developed Family-Centered Care Assessment Tool published in Maternal and Child Health Journal, April 8, 2015.
This article describes the family-led process to produce the FCCA tool to measure families' experience of care with excellent psychometric properties.