Abstract
The objective of this study was to create a psychometrically sound measure of family-centered care, the Family-Centered Care Assessment (FCCA), developed through a process led by families in collaboration with maternal and child health leaders. The items for the FCCA scale were initially developed by families of children and youth with special needs in partnership with pediatric providers and researchers. Using an Institutional Review Board-approved research protocol, the questions were revised based on input from focus groups of diverse parents in three states. Parental responses (N = 790) to the revised 59-item survey were collected online from families in 49 states. Item distributions uniformly showed excellent spread. A principal axes factor analysis confirmed the existence of a single factor. Rasch modeling item analyses identified a reduced subset of 24 items that demonstrated excellent psychometric properties. All items met the criteria for a linear Rasch scale. Empirical evidence in support of the construct validity of the 24-item measure was derived: all items had a positive and substantial item–total correlation; person alpha scale reliability was >0.80 and the item reliability was >0.90; both separation indices were >2.0; infit and outfit statistics were within 0.5–1.5; and item difficulties ranged between −2 and +2 logits. Strong rank-ordered associations and large effect sizes were observed for six indicators of quality of care. This study’s family-led process produced a tool, the FCCA, to measure families’ experience of care with excellent psychometric properties.
Highlights
The concept of family-centered care has been central in health services for the estimated 14.6 million [1] children and youth with special health care needs (CYSHCN) and their families for over 20 years, guided by the legislative mandate of the 1989 Omnibus Budget Reconciliation Act and the federal Maternal and Child Health Bureau (MCHB) [2].Family-centered care is a way of providing services that assures the health and well-being of children and their families through respectful family–professional partnerships
The objective of this study was to create a psychometrically sound measure of family-centered care, the Family-Centered Care Assessment (FCCA), developed through a process led by families in collaboration with maternal and child health leaders
The self-assessment questions were grounded in the concepts that had previously been identified by families of CYSHCN as important in quality of care, and were critically reviewed by expert pediatric providers and policymakers from the Academy of Pediatrics (AAP), MCHB, schools of public health, and by researchers
Summary
The concept of family-centered care has been central in health services for the estimated 14.6 million [1] children and youth with special health care needs (CYSHCN) and their families for over 20 years, guided by the legislative mandate of the 1989 Omnibus Budget Reconciliation Act and the federal Maternal and Child Health Bureau (MCHB) [2].Family-centered care is a way of providing services that assures the health and well-being of children and their families through respectful family–professional partnerships.
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