Family Involvement in Health Care Research: The "Building on Family Strengths" Case Study

Families of children with chronic conditions require quality programs that address the child's needs in the context of daily family life. These programs need to be tested for effectiveness in randomized clinical trials. One such program, Building on Family Strengths, was developed from a family-centered approach with parents of children with special health care needs involved in many aspects of the research project. This article articulates specific ways parents were involved in the project, with particular emphasis on the role of the parent co-investigator. The driving philosophy of family-centered care and related work of participatory research are discussed as foundational to the process. Challenges, solutions, and recommendations for parent involvement in future research of this type are discussed.