Family Participation in Evaluating Systems of Care

Abstract

Service programs are paying increased attention to family participation in research and evaluation activities. This article describes the results of a survey that was conducted in 37 sites constituting 31 programs funded by the Center for Mental Health Services to build systems of care for children with serious mental health challenges and their families. At each site, the program director, the evaluator, and a family member completed a questionnaire about family involvement in research. Respondents reported relatively high family participation in such activities as modification of questionnaires, collecting data, and reviewing results. In addition, most family members were compensated for their research tasks. Low family participation was reported in the hiring of research staff and data processing. Overall, agreement among the three types of respondents was moderately high. Focus groups conducted in sites with the highest degree of family involvement in research revealed that family participation was perceived to improve the quality of data collected and, ultimately, the services provided to children and their families.