title: The Family Value of Information, Community Support, and Experience Study: Rationale, Design, and Methods of a "Family-Centered" Research Study.
abstract: The Patient Protection and Affordable Care Act focuses on improving consumer engagement and patient-centered care. This article describes the design and rationale of a study targeting family engagement in pediatric mental health services. The study is a 90-day randomized trial of a telephone-delivered Family Navigator services versus usual care for parents of Medicaid-insured youth younger than 13 years with serious mental illness. Youth are identified through a pediatric antipsychotic medication preauthorization program. Family Navigators offer peer support to empower and engage parents in their child's recovery. Outcomes include parent report of empowerment, social support, satisfaction with child mental health services, and child functioning as well as claims-based measures of psychotherapy service utilization and antipsychotic medication dosage. The focus on "family-centered" care in this study is strongly supported by the active role of consumers in study design and implementation.
authors.affiliation: *Child and Adolescent Psychiatry Division, Department of Psychiatry, School of Medicine, †Maryland Psychiatric Research Center, School of Medicine, ‡Department of Psychology, and §Division of Services Research, Department of Psychiatry, School of Medicine, University of Maryland, Baltimore; ∥Family-Run Executive Director Leadership Association, Ellicott City; ¶Maryland Coalition of Families for Children's Mental Health, Columbia; #Division of Child and Adolescent Psychiatry, Johns Hopkins University School of Medicine; **School of Pharmacy, University of Maryland; ††Maryland Mental Hygiene Administration Spring Grove Hospital Center, Baltimore, MD; ‡‡Department of Child & Adolescent Psychiatry, New York University Langone Medical Center and School of Medicine; and §§Center for School Mental Health, Division of Child and Adolescent Psychiatry, and ∥∥Bioethics and Health Disparities Research Center, School of Medicine, University of Maryland, Baltimore, MD.
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