While the public has made accommodations for 54.4 million people with disabilities, many researchers regularly exclude people who cannot read, hear or write from participating in their research projects.
That's about to change. The Frances Payne Bolton School of Nursing (FPB) at Case Western Reserve University will develop research tools and strategies to include individuals with vision and hearing impairments in future research.
Shirley Moore, Edward J. and Louise Mellen Professor of Nursing and director of the National Institutes of Health-funded Center for Self-Management Research (SMART Center) at FPB, is the lead investigator for the two-year, nearly $400,000 National Institute for Nursing Research-funded project, "Full Inclusion of Persons with Disabilities (FIND) in Self-Management Research."
She will work with co-investigator Ann Williams, National Institute of Health-supported postdoctoral fellow, who has been working on a health-related research project with blind diabetics.
Williams' work inspired Moore.
The study is built on the Principles of Universal Design, developed for school teachers to tailor school work for children with special needs.
FIND will bring together a collaboration of experts from the Cleveland Sight Center and the Cleveland Hearing and Speech Center along with researchers in engineering, teaching and rehabilitation specialists of persons with disabilities and communication scientists. The center will also draw from available technologies at the university's Prevention Research Center and Behavior Measurement Core Facilities, and from other universities and self-management centers around the country.
Staff from the sight and hearing centers will conduct a series of workshops for researchers. During these sessions, researchers will learn about communication technologies for the blind and hearing impaired that can be used to gather data for their research projects.
FIND will also establish a demonstration center, the FIND Lab, where tactile, hearing and other tools to assist participants can be tried and used for practice by researchers or their assistants gathering the data.
"It is important that we do research representative of the people being studied," says Moore, citing that 15 percent of diabetics are visually impaired but regularly barred from participating in research about their chronic illness because they have problems seeing.
When everyone has a chance to participate, overall research findings will be more robust and reduce bias in studies, says Moore.
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