Participatory Action Research and Public Policy.

This paper describes collegial model approaches to the interactions between rehabilitation researchers and individuals with disabilities or their family members. The approaches, called participatory research and participatory action research, grew out of a 1989 conference sponsored by the National Institute on Disability and Rehabilitation Research (NIDRR) and out of a 1991 conference presentation by the director of NIDRR. A rationale for use of a model of participatory research is presented, and the model is described as involving its subjects in the research process from initial design to final conclusions. Five principles that should guide research on people with disabilities and their families are presented, including: research is a means, not an end; research should be a collaborative endeavor based on mutual respect, trust, potential benefits, and acceptance of each party's responsibilities; research should be sensitive to cultural, socioeconomic, ethnic, lifestyle, and life span pluralisms; research should allow for a combination of paradigms and methodologies; and funding for family research should be expanded. Forces creating pressure to support a shift in research paradigms are outlined, and the role of the NIDRR in support of the model is discussed. (Seven references) (JDD)