Special supplement offers tools to measure stigma related to being d/Deaf and Hard of Hearing

RTI collaborated with Duke University and other partners on the research, published in Ear and Hearing

RESEARCH TRIANGLE PARK, N.C. - RTI International, a nonprofit research institute, in collaboration with Duke University and other partners, has led research culminating in a special supplement in the journal Ear and Hearing that offers tools for measuring stigma associated with being d/Deaf and Hard of Hearing (d/DHH).

The supplement, titled "Measure to Understand: Tools to Assess d/Deaf and Hard of Hearing Stigma," presents work by an interdisciplinary working group on stigma convened under The Lancet Commission on Hearing Loss. The measures are tailored for use with individuals who are d/DHH, as well as their parents, care partners, and health care providers. The special supplement also covers specific measures related to hearing device stigma and ageism.

"Stigma undermines health care engagement and overall well-being for people who are d/Deaf and Hard of Hearing," said Laura Nyblade, Ph.D., a Fellow and senior stigma and discrimination technical advisor at RTI, who co-led the research. "With a standardized approach to measuring stigma, we can better understand how stigma affects different populations of people who are d/Deaf and Hard of Hearing, develop interventions to address that stigma, and assess the effectiveness of those interventions."

The suite of tools presented in the supplement measure different manifestations of stigma with the goal of inspiring innovative strategies for stigma reduction. They result from a comprehensive study that involved data collection with six segments of the U.S. population and four segments of the Ghanian population, including individuals with acquired hearing loss, individuals with lifelong d/DHH, parents of children who are d/DHH, care partners to people who are d/DHH, health care professionals, and the general population.

"We have known for some time now that hearing loss stigma impacts the lived experience of individuals who are d/Deaf and Hard of Hearing, including the decision to seek treatment," said Howard Francis, M.D., MBA, FACS, chair of the Duke Head and Neck Surgery & Communication Sciences (HNS&CS) Department and Richard Hall Chaney, Sr. Distinguished Professor of Otolaryngology. "Finally we have the opportunity to measure and understand how hearing loss stigma operates, and develop strategies to mitigate its impact and improve hearing health outcomes."

In addition to Laura Nyblade, Ph.D., the RTI-led research team included Rachel Stelmach, MPH, Elizabeth Troutman Adams, Ph.D., Khalida Saalim, MSPH, Adam Preston, MBA, and Gabriel Madson, Ph.D. They worked in collaboration with partners in Ghana, including the Educational and Assessment Research Center, Accra, and the Speech and Hearing Center, Accra. Additional partners included researchers from the Kwame Nkrumah University of Science and Technology, Kumasi, University of North Carolina, Georgetown University, Gallaudet University and the University of California San Francisco.

Read the special supplement (via Ear and Hearing)

Learn more about RTI's research on interventions and prevention programs