Sight translation by Certified Deaf Interpreter Steven Stubbs.
Navigating the healthcare system, whether it’s finding a primary doctor or determining which specialist to see after a diagnosis, is not an easy task. The healthcare system is complex and there is not just one right way to find and receive care. Health literacy, “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (health.gov) is not something people are born with; it is an acquired knowledge base that currently only 12% of Americans possess. However, health literacy can be even more difficult to obtain when not provided in a patient’s native language, which is the case for Deaf patients.
In 2004, a survey was conducted in Chicago with 203 Deaf people at Advocate Illinois Masonic Medical Center and Sinai’s Deaf Access Program in an effort to gauge their experiences with the healthcare system, any barriers they may have encountered and their healthcare knowledge. Though the respondents demographics varied, their education, race, and age did not differentiate them; the results showed poor health literacy across the board. Of the 203 respondents, 40% were unable to identify a warning sign of a heart attack; 62% couldn’t identify the warning signs of a stroke; 62% couldn’t define cholesterol; 82% of women in the survey couldn’t explain what took place during a pap smear; and 54% didn’t realize that anal sex without a condom increased the risk of contracting HIV.
As noted earlier, the education level obtained by the respondents didn’t determine whether or not they were more or less proficient in their healthcare. Health literacy is most commonly acquired through incidental learning and environmental factors.
In the United States, 90% of Deaf children are born to hearing parents and most commonly, those hearing parents don’t become fluent in American Sign Language (ASL). As a result, Deaf children are left out of conversations or given hyphenated answers to their questions. For example, an aunt may be in the hospital for a heart attack and the Deaf child may ask his or her hearing mother what happened, but because mom is not fluent in ASL she tells the Deaf child that the aunt’s heart is “sick” without going into further detail. Whereas a hearing child would have the ability to overhear family talking about the aunt’s heart attack, in turn, giving the hearing child the chance to learn the warning signs and symptoms and what will happen next.
Similarly, a hearing child is more easily prompted to ask questions based on what they hear on the radio or television. It is commonplace to see television commercials advertising the latest medication and a hearing child may turn to mom or dad and ask, “What is….” whereas a Deaf child is less likely to do so and if they do, his or her parents may not have the sign language skills to answer completely or even the healthcare knowledge themselves. Parents act as the gatekeepers to medical knowledge, and this can be further compounded when medical professionals and staff encounter Deaf patients and don’t provide interpreters or depend on hearing family to relay information to a Deaf patient.
Unfortunately, the ramification of such a deficit in healthcare knowledge extends into adulthood. The only way to correct this deficit, which also applies to hearing patients, is to make a conscious effort to learn about basic healthcare, body systems, and diagnoses, but considering only 12% of Americans are proficient in healthcare, this does not routinely happen.
After considering all of this, what can be done? At the very least, all appointments should have certified American Sign Language interpreters with medical interpreting experience. Reading and writing in English is an inappropriate substitute for interpreters and can lead to further confusion and a higher likelihood that a patient won’t follow through on the suggested medical intervention. Additionally, in-services about the Deaf community and their cultural qualities can go a long way in helping doctors and medical personnel understand their Deaf patients.
An existing resource that is invaluable to the Deaf community is www.deafhealth.org. This website provides videos on healthcare tests, ailments, conditions, diseases etc. in ASL. The opportunity to learn about routine tests and diseases along with a list of Deaf friendly healthcare providers is instrumental in improving healthcare literacy across the Deaf community. It is a joint effort between providers and patients to strengthen healthcare literacy across the Deaf community and general population.
The lack of healthcare literacy across America and within the Deaf community is a contributing factor to increased hospitalizations due to preventable ailments, a rise in unmanaged chronic conditions and a decrease in routine healthcare screenings and preventative services. According to health.gov, “Persons with limited health literacy skills make greater use of services designed to treat complications of disease and less use of services designed to prevent complications.” Not only does this fact lead to a sicker population, but the cost of healthcare rises due to treating ailments in hospitals instead of preventing them in doctors’ offices. Healthcare literacy is an acquired knowledge base and an important one to pursue and with the collaborative efforts of patients, community stakeholders, and medical providers, a healthier population is bound to result.