title: Participatory action research designs in applied disability and rehabilitation science: protecting against threats to social validity.
abstract: Researchers and disability advocates have been debating consumer involvement in disability and rehabilitation science since at least 1972. Despite the length of this debate, much confusion remains. Consumer involvement may represent a spirit of democracy or even empowerment, but as a tool of science, it is necessary to understand how to judge its application. To realize consumer involvement as a design element in science, researchers need a framework for understanding how it can contribute to the scientific process. The thesis of this article is that a primary scientific function of consumer involvement is to reduce threats to the social validity of research, the extent to which those expected to use or benefit from research products judge them as useful and actually use them. Social validity has traditionally not been treated with the same rigor as concerns for internal and external validity. This article presents a framework that describes 7 threats to social validity and explains how 15 forms of consumer involvement protect against those threats. We also suggest procedures for reporting and reviewing consumer involvement in proposals and manuscripts. This framework offers tools familiar to all scientists for identifying threats to the quality of research, and for judging the effectiveness of strategies for protecting against those threats. It may also enhance the standing of consumer involvement strategies as tools for protecting research quality by organizing them in a way that allows for systematic criticism of their effectiveness and subsequent improvement.
authors.affiliation: Department of Psychology and Research and Training Center on Disability in Rural Communities, The University of Montana, Missoula, MT 59812, USA. ruraldoc@ruralinstitute.umt.edu
authors.forename: Tom
authors.initials: T
authors.lastname: Seekins
authors.forename: Glen W
authors.initials: GW
authors.lastname: White
mesh_terms: D026683:Advisory Committees / Q000458:organization & administration; D003256:Community Participation / Q000379:methods*; D006233:Persons with Disabilities; D017144:Focus Groups; D017408:Guidelines as Topic; D006801:Humans; D007857:Leadership; D010344:Patient Advocacy; D026761:Physical Therapy Specialty / Q000458:organization & administration*; D011209:Power, Psychological; D012046:Rehabilitation; D012107:Research Design; D012945:Social Values; D057170:Translational Research, Biomedical / Q000458:organization & administration*