Deaf ASL users are an understudied and underserved linguistic minority population who are in need of cardiovascular health research and education. This study provided further information on cardiovascular perceptions which can be useful in guiding future projects to help improve understanding of cardiovascular health.
Health information access posed a challenge for many of the participants in the focus groups. As a result, much of the knowledge Deaf individuals acquired was obtained through personal experiences and/or shared experiences of spouses, family members, and Deaf friends. This limited the opportunity to correct inaccurate health information or to deepen an understanding of a health concept. Many of the participants, as a result, had superficial cardiovascular health knowledge that was easily distorted.
Margellos-Anast et al.(2006) showed similar findings with dismal awareness of cardiovascular disease among Deaf ASL adult users residing in Chicago; 40% of respondents were unable to list any symptoms of a heart attack, over 60% could not do the same for stroke, and only 61% reported that they would call 911 if they had any acute cardiovascular symptoms.16
Furthermore, communication and language barriers can affect how Deaf individuals acquire information through incidental learning opportunities. Poor knowledge of family history was evident among the discussions in our focus groups (five out of 22 participants). Many Deaf individuals are familiar with the “dinner table syndrome”, where they have consciously or subconsciously experienced years at the dinner table and other social situations watching close family members and friends converse with each other but are unable to decipher what is being said.18
Poor intra-family communication can reduce knowledge of family history, making it problematic for health care providers who screen and care for Deaf individuals. Worse yet, many other sources of information and communication technologies such as the telephone, radio, and television historically isolated Deaf individuals from information in mainstream society.19
Without the ability to hear spoken language, Deaf ASL users may be impeded in their ability to benefit from auditory reinforcement to clarify and expand their vocabulary, including health terminology and concepts.
Stress, from a number of factors: unemployment/low income, language barriers, low education, poor knowledge of family history, poor health care access and/or public insurance, was considered to be a major contributor to cardiovascular disease by many of the participants. Chronic stress from these factors can lead to health disparities for many individuals in marginalized groups.20
Yet, it is unclear if the dangers from stress were perceived or real. Further research is needed to explore the relationship with chronic stress and cardiovascular risk.
Many Deaf ASL users struggle with poor communication with their health care providers, which may reduce their fund of knowledge about multiple health issues and may decrease the quality of their health care visit. Despite the passage of the Americans with Disabilities Act (1990), accessible communication at health care settings occurred irregularly for many of the participants in the focus groups. Due to poorer communication with their providers, Deaf ASL users seek health care less often compared to other Deaf individuals who lose their hearing after the acquisition of spoken language.21
As compared to the national study of CVD perceptions among underserved hearing people, our Deaf study participants shared characteristics of both the non-English speaking groups and the underserved English speakers.17
Communication and language barriers prevented access to critical health information from educational health programs, the Internet, as well as health care visits for many of the Deaf ASL users in the study. Deaf ASL users also struggled with structural constraints of too little money, difficult to understand federal support systems, easily accessed fast foods, and too little time which frustrated their ability to put what knowledge they did have into daily practice, similar to underserved English-speaking groups.
To the best of our knowledge, this is the first published study to examine Deaf ASL individual’s cardiovascular perceptions yet there are certain limitations with the study. The data was obtained from a relatively small sample size. The data was also gathered in Rochester, NY which may not be generalized to other Deaf communities in the United States. Rochester differs from a number of other Deaf communities across the United States in regards to its higher rate of accessible health centers, programs and interpreters for the Deaf. It has been reported that Rochester has one of the highest per capita of Deaf individuals in the United States. Thus, the study’s findings may not be fully generalizable to other Deaf communities in the United States.