Health Literacy and Usher Syndrome

The background is a photo of a forest with light shining through tall trees and green moss. White and gold text on a navy background reads: On Well-Being: Health Literacy and USH. October 2024. The Usher Syndrome Coalition logo is below the text

The U.S. Department of Health and Human Services (HHS) defines personal health literacy as the degree to which individuals can find, understand, and use information and services to inform health-related decisions and actions for themselves and others.

Research shows that hearing loss of any degree can affect the amount and quality of health information a person receives. This can impact both children and adults with Usher syndrome in several ways. First, they may miss out on casual family conversations, like learning about an aunt’s breast cancer treatment or an uncle’s recent diabetes diagnosis. Second, health-related articles and websites may not be accessible to individuals with low vision or those who rely on screen-reading technology. Lastly, the lack of sign language interpreters or other accommodations in healthcare settings can significantly limit access to information from providers, making it harder to understand one's own health history or feel empowered to advocate for oneself.

As clinical trial opportunities become available to the Usher community, health literacy becomes critical. The informed consent process can be overwhelming. Documents are often filled with complex medical and legal language even though research guidelines suggest that materials should be written at about a 6th-grade reading level. It’s completely valid to feel unsure about what you're reading, and it’s your right and responsibility to ask questions. Your medical team must do everything to ensure you understand before you consent to participate. You should also know that it is your right to stop participating in a study or clinical trial at any time. Make sure you understand all of the facts and the potential impact of stopping participation on your health and well-being. 

The Coalition’s science summaries and social media series are designed to help you build a strong foundation in the basics while breaking down complex concepts. In this way, you can feel empowered to ask critical questions, better understand the data, and make informed choices about your health.

Together, we can build a world where everyone has equal access to clear and useful health information, leading to better health outcomes. Visit healthliteracymonth.org to learn how you can turn awareness into action!

Ways to improve your health literacy:

  • Find a medical provider who understands Usher syndrome and/or is willing to learn about your specific communication needs.
  • Let your provider know your preferred language and communication methods (sign, spoken language, writing, apps, etc.). It is their responsibility to provide you access to clear speech, written materials, sign language interpreters or other supports as needed.
  • Ask questions if something is unclear during your medical appointments. Your provider should take the time to explain.
  • Speak up if you have concerns about your care or treatment.
  • Ask for a written or electronic copy of the medical advice your doctor gives, and make sure you understand it fully before leaving your appointment.
  • Choose well-respected and vetted sources for online health advice; not all sources are reliable.

References