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Dr. Poorna Kushalnagar (top right) speaks with her lab students, research assistants, and staff at the Deaf Health Communications and Quality of Life Center (DHCQL). Photo by Zhee Chatmon.
A video created by undergraduate research assistants and staff in Gallaudet’s Deaf Health Communications and Quality of Life Center (DHCQL) was highlighted by the National Cancer Institute and National Institute on Deafness and Other Communication Disorders.
Dr. Poorna Kushalnagar, ’93, created and administered a national health information trends survey in ASL along with her team at DHCQL. This survey was designed to understand deaf signers’ trends in seeking health information. With consultation from Stacy Marie Lawrence of Rochester, New York, they produced a video describing Kushalnagar’s research and key findings.
Deaf people were asked how they accessed health information and which source they went to first.
Kushalnagar attended Gallaudet’s Young Scholars Program while in high school and fell in love with the accessible learning environment. Years later, she pursued her Ph.D. in developmental psychology followed by postdoctoral fellowships in patient-reported outcomes research and preventive medicine. Her passion aims at reducing health disparities and improving deaf people’s health outcomes.
“Some deaf people miss out on incidental information related to health,” said Kushalnagar. “Research has identified several factors that contribute to poorer health knowledge: low health literacy, communication barriers, and inaccessible health information. My colleagues at RIT and Gallaudet collaborated on a study and found that deaf college students who share accurate health information are more likely to have higher critical health literacy skills.
“It appears that for the deaf community, sharing health information can help fill the knowledge gap for deaf people who miss out on important information related to health.”
TraciAnn Hoglind, ’16, one of the staff assistants participating in the video, helped gather information.
“Whenever my friends got minor injuries, I would always be excited to help clean their wounds and do health research on certain symptoms and treatments,” said Hoglind. “But I didn’t think I was going to get a job in healthcare because I had a degree in psychology and three years of research experience in a neuroscience lab. I didn’t come to that realization until I met Kushalnagar; after explaining her work at the Deaf Health Communication and Quality of Life Center, I knew it was a perfect opportunity for me to jump in with my research experience and learn more about healthcare and accessibility.”
During her work with the HINTS-ASL survey project in the DHC-QoL lab, Hoglind recognized the lack of resources available to deaf people.
“There is very little health and wellness information accessible in ASL,” said Hoglind. “Where can deaf people easily find health information they can trust? I hope to see this improve in the next few years. The HINTS-ASL survey was beneficial for deaf participants because they were able to learn things they never knew about. The surveys also acted as a motivation for them to visit their doctor.”
Maleni Chaitoo, ’03, Hayden Shock, ’16, and current student Sajiran Nadarajah, all featured in the video, described their health issues and experiences.
Chaitoo, a Hodgkin’s Lymphoma survivor, described her initial diagnosis 20 years ago, following her freshman year at Gallaudet.
“I stayed in the hospital for three weeks during treatment,” said Chaitoo. “The hospital did not always provide interpreters. I was a young 20-year-old, so I did not know what to do. I relied on my older sisters and mother to interpret. I did not know how to request an interpreter. It was not easy to access information back then, especially without the Internet. I had to rely on magazines, educational publications, and the guidance of my friends, family, and former science teachers. It was a scary, confusing, and emotional time. I am blessed to be healthy and alive today.”
Shock was diagnosed with kidney failure, stage five, in 2016.
“I shared my health situation on social media, and someone who had the same disease reached out to me,” said Shock. “I felt better knowing I wasn’t alone and knowing someone who went through the same thing. It was a relief knowing she was okay, because then I knew I would be okay, too.”
Shock described his experience at the hospital, confirming he had 24/7 access to an interpreter.
“The doctors explained everything, A to Z, to us,” said Shock. “No information was left out. Thanks to that, I feel encouraged and ready for my kidney transplant soon.”
Nadarajah shared his family history of diabetes and cancer.
“Once my mother got diabetes, she explained how important it was to eat carefully and to make adjustments,” said Nadarajah. “It made sense that she had diabetes, given the history of diabetes in her family. I became more careful with what I ate, as I did not want to get diabetes.”
Regarding deaf people’s health needs being addressed in the industry, Kushalnagar was happy to see these needs addressed by the National Institutes of Health (NIH). Her request for additional funding was approved, with $100,000 going towards inclusion of deaf sexual and gender minority (Deaf-SGM) individuals in her nationwide patient-reported outcomes research project. This project will involve collaboration with Dr. Cara Miller, G-’10 & PhD ’11, LGBTQ program director; Keith Sanfacon, ’91, lecturer, Physical Education and Recreation; Alexander Leffers, ’93, web content developer and editor, Marketing and Creative Services; and Lori DeWindt, ’94 & G-’96. Andrew Biskupiak, ’16, will assist with coordinating recruitment effort for the Deaf-SGM project, with support from community recruiters across the nation. Future projects will focus on dissemination and implementation activities in the deaf community.
“I would love to see the reduction to none in health disparities, not only for deaf people, but also for the beautiful diversity groups in our communities,” said Hoglind. “This requires changes in accessibility, policies and laws, and the stigmas associated with minorities in healthcare. I strive to make improvements in health disparities and health equity through my work with Kushalnagar, as well as with my ongoing Masters in Public Health education at Boston University.”
The team hopes that the video and recognition by NIH will help to strengthen health information access for the deaf community in the future. Kushalnagar’s new student videographer, Gideon Firl, wrote a script on HPV vaccination based on Kushalnagar’s recent study results and completed filming at Boston Children’s Hospital. This film is being edited by Dimitri Foreman, ’17, and will be released soon. Kushalnagar’s lab will continue to identify gaps in health care and use this information to improve health services for deaf patients, and distribute reports to the Gallaudet community from time to time with updates.
DHCQL team members, from left: Abbi Simons, Hoglind, Foreman, Kushalnagar, Emmanuel Njoku-Perrodin, Karissa Mirus, and Tara Holcomb, ’11.
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