Recruiting People With Disabilities as Research Participants: Challenges and Strategies to Address Them

The challenges of surveying people with disabilities are discussed and possible strategies to address these challenges are discussed, based upon a face-to-face in-terview study of adults with disabilities conducted over a 2-year period in two cities within a largesouthwestern state.

Abstract

As service professionals strive to become morefocused on the needs and aspirations of people withdisabilities, soliciting information directly from in-dividuals about their perceptions of their lives hasbecome increasingly important (Freedman, 2001;Rapley, 2003; Schalock, 1994; Sigelman, Budd,Spanhel, & Schoenrock, 1981; Sigelman et al.,1980). People with disabilities are taking a largerand more primary role in the planning, evaluation,and delivery of services. Consequently, the natureof research efforts has been evolving from one inwhich investigators treat people with disabilities assubjects to one that includes these ‘‘subjects’’ in thedesign and implementation of the research. Con-ducting such studies requires careful planning onthe part of researchers. In this paper we reflect onthe challenges of surveying people with disabilitiesand discuss possible strategies to address these chal-lenges.Our experience is based upon a face-to-face in-terview study of adults with disabilities conductedover a 2-year period in two cities within a largesouthwestern state. Project Asking Consumers toIndicate Their Own Needs and Strengths (AC-TIONS) was designed to enable researchers to gath-er information about the perceptions of people witha wide range of disabling conditions about their life.The state’s Council on Developmental Disabilities,which funded the study, planned to use this infor-mation in their planning process.Project ACTIONS’ advisory group decidedthat those individuals we recruited should have thecapacity to consent to participation, operationallydefined as individuals who did not have a legalguardian. The recruitment plan included surveyingindividuals with a range of disabling conditions, in-cluding physical/mobility impairments, whethercongenital or the result of trauma; developmentaldisabilities, including cognitive impairments (in themild to moderate range); and other disabling con-ditions. Both males and females were recruited intothis multi-ethnic sample.