Assessing family outcomes

Abstract

Background In the USA, early intervention programs for children with disabilities are expected to report outcomes for both children and families to evaluate whether programs are achieving expected benefits. In the case of family outcomes, there was no agreed-upon framework for what outcomes might be important or how they should be assessed. As part of the Early Childhood Outcomes Center, the author led a national effort to reach consensus on desired family outcomes and then to develop an assessment instrument. Methods A national validation effort involving multiple stakeholders was used to identify five family outcomes: families should (a) understand their child’s strengths, abilities, and special needs; (b) know their rights and advocate effectively for their children; (c) help their child develop and learn; (d) have support systems; and (e) access desired services, programs, and activities in their community. These outcomes provided the conceptual framework for developing a new assessment instrument, the Family Outcomes Survey. Results An initial version of the survey was developed and used in a study of families in two states, followed by a study of Hispanic families. Based on state input, a revision was undertaken to have a more carefully documented set of items related to each outcome. Stakeholder and expert input was used to identify concepts and develop candidate items. A web-based survey was conducted with 265 families and data were used to assess the psychometric properties of candidate items. Conclusions These activities produced a revised survey with sound psychometric integrity to document family outcomes and identify areas for program improvement. The scale has now been translated into 14 languages and used in a number of countries. A central question remains unanswered: are desired family outcomes comparable across countries and does the FOS-R work well in different cultural contexts?