Development of Measures for d/Deaf and Hard of Hearing Stigma: Introduction to the Special Supplement on Stigma Measurement Tools.
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2024-09
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People who are d/Deaf or hard of hearing (d/DHH) often experience stigma and discrimination in their daily lives. Qualitative research describing their lived experiences has provided useful, in-depth insights into the pervasiveness of stigma. Quantitative measures could facilitate further investigation of the scope of this phenomenon. Thus, under the auspices of the Lancet Commission on Hearing Loss, we developed and preliminarily validated survey measures of different types of stigma related to d/Deafness and hearing loss in the United States (a high-income country) and Ghana (a lower-middle income country). In this introductory article, we first present working definitions of the different types of stigma; an overview of what is known about stigma in the context of hearing loss; and the motivation underlying the development of measures that capture different types of stigma from the perspectives of different key groups. We then describe the mixed-methods exploratory sequential approach used to develop the stigma measures for several key groups: people who are d/DHH, parents of children who are d/DHH, care partners of people who are d/DHH, healthcare providers, and the general population. The subsequent manuscripts in this special supplement of Ear and Hearing describe the psychometric validation of the various stigma scales developed using these methods.
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Stockton, Melissa A, Howard W Francis, Jessica S West, Rachel D Stelmach, Elizabeth Troutman Adams, John D Kraemer, Khalida Saalim, Margaret I Wallhagen, et al. (2024). Development of Measures for d/Deaf and Hard of Hearing Stigma: Introduction to the Special Supplement on Stigma Measurement Tools. Ear and hearing, 45(Suppl 1). pp. 4S–16S. 10.1097/aud.0000000000001543 Retrieved from https://hdl.handle.net/10161/34281.
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Scholars@Duke
Howard Wayne Francis
Dr. Howard W. Francis, is the Richard Hall Chaney, Sr professor of Otolaryngology and inaugural Chair of the Department of Head and Neck Surgery & Communication Sciences (HNS&CS) at Duke University Medical Center, where he is also the Chief of the Medical Staff of Duke University Hospital. He is a practicing neurotologist with research interests including practice innovations and clinical outcomes in the delivery of hearing health care. He is a senior editor of the Cummings Otolaryngology-Head and Neck Surgery Text, is a Director on the American Board of Otolaryngology-Head and Neck Surgery, a past member of the Otolaryngology Residency Review Committee of the ACGME, and a member of the Board of Directors of the Alexander Graham Bell Association for the Deaf and Hard of Hearing. Dr. Francis is a past president of the Society of University Otolaryngologists, past Education Director of the American Neurotology Society, and a recipient of the 2020 American Academy of Otolaryngology-Head and Neck Surgery Presidential Citation.
After completing his high-school education in Jamaica, and his bachelor’s degree at the University of Southern California in Los Angeles, Dr. Francis earned his medical degree from the Harvard-MIT division of Health, Science and Technology at Harvard Medical School, and then completed his internship, residency and fellowship training at the Johns Hopkins Hospital. He completed his Master’s in Business Administration with a focus in medical services management at the Johns Hopkins Carey Business School. After 19 years on the faculty at Johns Hopkins during which he served as Residency Program Director, Director of the Johns Hopkins Listening Center and Vice Director of the Department, he was appointed chief of HNS&CS at Duke in March 2017, and then the first Chair of the new Department in 2019.
Jessica Sayles West
Jessica is a medical sociologist who specializes in research on hearing loss, aging, and health disparities over the life course. Jessica’s work has described the “spillover” effects of hearing loss on health outcomes for both individuals and those close to them, as well as sociodemographic disparities in the onset of and life expectancy with hearing loss. Her research, which leverages both population-level data and electronic health record data, has appeared in the Journals of Gerontology, Social Science & Medicine, Ear and Hearing, and other leading journals in medical sociology, hearing, and aging research.
Jessica received a B.A. from the University of Michigan in Social Anthropology (dual Sociology/Anthropology concentration) followed by an M.P.H. in Sociomedical Sciences with a certificate in Public Health Research Methods from Columbia University’s Mailman School of Public Health. She subsequently received an M.A. and Ph.D. in Sociology with a focus in Medical Sociology and Demography at Duke University. She then completed an NIA T32 Postdoctoral Fellowship at the Duke University Aging Center under the mentorship of Matthew E. Dupre, Ph.D. (Population Health Sciences) and Sherri L. Smith, Au.D., Ph.D. (Head and Neck Surgery & Communication Sciences).
Debara Lyn Tucci
The focus of current research efforts is in defining the effects of conductive hearing impairment on the development and function of the central auditory system. The ultimate goal of this research is to understand the impact of hearing loss, such as that associated with otitis media, on the development of auditory function in children. Experiments are currently being performed in which central auditory system activity is studied using the 2-deoxyglucose method following unilateral neonatal conductive hearing loss. Future experiments will examine changes in cell structure and interneuronal connections following acute and chronic conductive hearing loss in both neonatal and adult animals.
A second research program is focused on issues related to the cochlear implant. The cochlear implant is a device which allows for electrical stimulation of the auditory nerve in profoundly deaf patients. It has previously been demonstrated in animal studies as well as in human tissue histopathology that degeneration of central auditory pathways occurs following severe damage to the inner ear. It has been suggested that the introduction of electrical stimulation via a cochlear implant may prevent or reverse some of these degenerative changes. Experiments conducted previously examined this issue in the neonatally and adult deafened rat. Tissue analysis is currently undergoing completion.
Blake Shaw Wilson
Prof. Wilson is the Director of the Duke Hearing Center and is an Adjunct or Consulting Professor in each of three departments at Duke: Head and Neck Surgery & Communication Sciences, Biomedical Engineering, and Electrical and Computer Engineering. He has been involved in the development of the cochlear implant (CI) for four decades and is the inventor of many of the signal processing strategies used with the present-day CIs. One of his papers, in the journal Nature, is the most highly cited publication in the principal field of CIs. He also has become keenly interested in global hearing healthcare and presently is the Chair of the Lancet Commission on Hearing Loss. He or he and his teams or colleagues have been recognized with a high number of awards and honors, including the 2015 Russ Prize, “for engineering cochlear implants that allow the deaf to hear,” and the 2013 Lasker~DeBakey Award, “for the development of the modern cochlear implant – a device that bestows hearing to individuals with profound deafness.” The Russ Prize is the world’s top honor for bioengineering and the Lasker Awards are second only to the Nobel Prize in Physiology or Medicine for recognizing advances in medicine and medical science. Prof. Wilson is a recipient of the Distinguished Alumni Award from the Pratt School of Engineering at Duke (in 2007) and from the University as a whole (in 2019; the 42nd recipient of that Award). Additionally, he is a member of the USA’s National Academy of Engineering and is a Fellow of the Institute of Electrical and Electronics Engineers, the Acoustical Society of America, and the National Academy of Inventors.
Sherri L Smith
Dr. Smith's core research focuses on improving the assessment and treatment of hearing loss in older adults. Specifically, her work centers on comparing the effectiveness of current hearing interventions, developing new, innovative clinical tools, and examining alternative service-delivery approaches that help patients reach their individual hearing goals and improve their quality of life.
Dr. Smith also collaborates with multi-disciplinary teams to better understand the impact of hearing loss on other health conditions and services. Current projects involve understanding the impact of hearing loss on surgical outcomes in older adults, determining the mechanisms that may explain the independent association between hearing loss and falls in older adults, and comparing different models of hearing screenings for older adults in primary care settings.
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