Knowledge for a Better Life: Ensuring Research Benefits People With Disabilities

“If only I had known.” We all know what it’s like to learn too late information that could have helped us. In the disability and rehabilitation field, as in many health care fields, gaps between what we know and what we do exist too often. SEDL’s Disability Research to Practice (DRP) program is using knowledge translation (KT) to close these gaps. “Our goal is to ensure that the best available evidence guides disability practice and policy,” says John Westbrook, DRP program manager.

Using Knowledge Translation

For the 54 million Americans with disabilities—a number roughly equal to the combined total populations of California and Florida (U.S. Census Bureau, 2008)—research advances have the potential to transform lives. As in education, though, many pitfalls can prevent research from moving into practice. Knowledge users—practitioners, service providers, policymakers, and people with disabilities—may be too busy or lack the skills to locate and interpret research studies. Or dissemination methods may be ineffective in informing people about new evidence-based treatments (Straus, Tetroe, & Graham, 2009).

Knowledge translation involves actively and systematically working to overcome barriers to research use while also promoting the use of high-quality evidence. The process focuses on the entire knowledge cycle, from creation to application. KT activities address three main goals:

• They improve the quality and relevance of research by encouraging researchers to use rigorous designs, incorporate knowledge users’ input, and focus on real-world needs and problems.
• They tailor research findings and dissemination methods to help specific groups access and understand the information.
• They promote the application of evidence-based knowledge through action or change—a new or best practice, a change in a policy or service, or the production of a new device or treatment (Murphy & Westbrook, 2010; Straus, Tetroe, & Graham, 2009).

Unlike traditional approaches to disseminating and supporting the use of research, “KT works to ensure the development and implementation of the best evidence-based interventions and policies available today,” explains Westbrook.

Promoting High-Quality Research

Sam is a 3-year-old child who is eagerly exploring his world but not speaking. Speech pathologists describe children like Sam as late talkers and use various strategies to work with them. But little high-quality, evidence-based guidance is available about which strategies are most effective (Johnson, 2006).

Stepping in to help is a team of researchers at Purdue University. Led by Anu Subramanian, a clinical assistant professor in the Department of Speech, Language, and Hearing Sciences, the team is conducting a systematic review of research studies on interventions for late talkers. A key KT tool, a systematic review identifies, appraises, synthesizes, and interprets all available high-quality studies on a specific intervention or question. The process is one of the most rigorous ways to determine the best available evidence for a treatment or practice.

“Individual studies are usually not a sufficient basis for large-scale changes in policy or interventions,” says Westbrook. “By looking across similar studies, systematic reviews can determine what we really know and how best to use the knowledge.” In this case, the Purdue team hopes its review will help inform speech pathologists about which evidence-based practices are most effective in helping children with language delays.

The Challenge. Creating a high-quality systematic review is a time-consuming and exacting process. Researchers must follow a predefined, rigorous, and explicit methodology. And like other types of research, a poorly designed and executed review can produce invalid findings that could possibly lead to the use of ineffective and even harmful treatments.

The KT Solution. For assistance, Subramanian and her team have turned to SEDL’s National Center for the Dissemination of Disability Research (NCDDR) and the Campbell Collaboration (C2). C2 is a nonprofit, international research group that supports the production and use of systematic reviews in the behavioral and social sciences. The two partners provide online courses on producing systematic reviews that meet the strictest international standards. The courses connect research teams from around the world with leading experts in all aspects of developing and reporting systematic reviews. Subramanian says the course has allowed her team to “bounce ideas off of [experts] at every step of the way, so we’re sure we’re doing the right thing and the best quality research.”

By participating in the course, the Purdue team is increasing the likelihood that its review will produce valid findings and be reported with sufficient depth for others to use it. Additional KT activities, such as providing a plain-language summary of the review and publishing the summary in online databases like the NCDDR KT Library and the C2 Library, will help users understand and access the results.

For speech pathologists, these activities increase the chance they will know and use the strategies that most benefit young children struggling with speech. For Sam, the hoped-for payoff is that he can one day talk with others about his explorations of his world.

Improving Services and Advocacy

In mid-2010, the unemployment rate for Americans with disabilities was 16.4%, compared with 9.5% for other Americans (Office of Disability Employment Policy, 2010). Wendy Wilkinson understands the challenges adults with disabilities face in finding and keeping jobs. As director of the Southwest ADA Center in Houston, Texas, she works to ensure that adults with disabilities have equal opportunities in the workplace and in public services.

The Southwest ADA Center is part of a network of regional Disability and Business Technical Assistance Centers (DBTACs) that inform individuals, businesses, and agencies about their rights and responsibilities under the Americans with Disabilities Act (ADA). The ADA prohibits discrimination based on disability in several areas. For instance, it requires employers to provide workers with disabilities with reasonable accommodations to perform their jobs. Accommodations may range from wheelchair access to a special computer keyboard. The centers do not enforce ADA compliance but rather expand understanding of the law through information dissemination, training, and technical assistance.

The Challenge. The DBTACs have been charged with improving knowledge translation by ensuring that their activities are evidence based and tailored to the needs and accessibility requirements of the people who use their services.

The KT Solution. To help meet this requirement, the Southwest ADA Center partnered with SEDL to conduct a survey of the people using their services who had both disabilities and recent work experience. “We sliced out what we thought was an important group . . . to see who they were and what their needs are,” explains Wilkinson. The survey asked this group about their current employment status and job experiences. Kathleen Murphy, a SEDL project director, served as lead researcher, along with Vinh Nguyen, director of legal research at the Southwest ADA Center.

Among the results, the survey found that respondents were disproportionately white. This finding has led Wilkinson to improve the Center’s outreach to underserved groups. “We know we’re in a region that has a lot of people who are Hispanic, so we need to do a better job with our outreach,” she says. Wilkinson noted that the survey also indicated that respondents who were working experienced a lot of issues related to disclosure of their disabilities. “That spoke to the need to . . . have more materials targeted to disclosure issues: when, where, and how to disclose your disability,” explains Wilkinson.

For the Southwest ADA Center, KT activities are helping them better advocate for the rights of people with disabilities. For the people using their services, being better informed about their rights under the ADA could mean the difference between having a job and being unemployed.

Working to Improve Lives

SEDL facilitates and supports KT in disability and rehabilitation through resources, initiatives, networks, service systems, and partnerships. Our latest initiative is the Center on Knowledge Translation for Employment Research, operated in partnership with Virginia Commonwealth University. This initiative will incorporate KT to promote employment among people with disabilities.

Bibliography

• Johnson, C. J. (2006). Getting started in evidence-based practice for childhood speech-language disorders. American Journal of Speech-Language Pathology, 15(1), 20–35. doi:10.1044/1058-0360(2006/004)
• Murphy, K. M., & Westbrook, J. D. (2010). Knowledge translation. In: J. H. Stone & M. Blouin (Eds.), International Encyclopedia of Rehabilitation. Retrieved from http://cirrie.buffalo.edu/encyclopedia/article.php?id=157&language=en
• Office of Disability Employment Policy. (2010). July 2010 disability employment statistics. Retrieved from http://www.dol.gov/odep/
• Straus, S. E., Tetroe, J., & Graham, I. (2009). Defining knowledge translation. Canadian Medical Association Journal, 181(3–4), 165–168.
• U.S. Census Bureau. (2008). Americans with disabilities: 2005. Retrieved from http://www.census.gov/newsroom/releases/archives/income_wealth/cb08-185.html

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