Original articleCancer screening knowledge, attitudes, and behaviors among culturally Deaf adults: Implications for informed decision making
Introduction
Approximately 20 million people in the United States have some form of hearing loss with about 1.2 million people being deaf [1]. It is more difficult to ascertain the number of persons who are culturally Deaf (“Deaf” with a capital “D”). Generally persons who self-identify as culturally Deaf experienced hearing loss before the age of three and use American Sign Language (ASL) as their primary form of communication. ASL is a unique language, with its own grammar and syntax; it is not a gestured representation of the English language [2]. Many Deaf people are not fluent in English. In fact, the average Deaf high school graduate has English language skills equivalent to those of a fourth-grade hearing student [3], [4]. The Deaf community is a cultural and linguistic minority [5], which means Deaf individuals experience unique challenges and barriers, especially when it comes to health care [6], [7].
Previous studies show that Deaf persons tend to have lower health status, lack health knowledge, have differing health attitudes, and decreased health care utilization when compared to the general population [5], [6], [8], [9], [10], [11], [13], [15]. For example, in a nationally representative sample of non-institutionalized US adults, Deaf adults had lower health status as compared to their hearing counterparts [8]. Other studies, which did not gather data regarding age at onset of deafness or use of ASL, have also found that persons with significant hearing loss had poorer health compared to their hearing counterparts [9], [10].
Studies have also shown that health-related knowledge among Deaf persons is low [6], [11]. The communication barriers that Deaf people face likely contribute to their lack of health knowledge [12]. For example, communication between a hearing physician and a Deaf patient is often limited because of the language barrier and lack of trust between the Deaf patient and the physician [13], [14]; exchanging written notes and reading lips often lead to minimal comprehension.
There has not been much research conducted on the attitudes of Deaf adults toward health and health care, but the limited data that does exist is not encouraging. A qualitative study of women with significant hearing loss, most of who identified with the Deaf community, found that many did not understand the importance of preventive care measures [6]. A study of mostly Deaf adults revealed that many were wary of the healthcare system as a result of prior negative health care experiences [5]. Another study has suggested that people with significant hearing loss rate the importance of certain health maintenance behaviors lower than their hearing counterparts [13].
Finally, research suggests that health care utilization is lower amongst those who are Deaf as compared to hearing persons. In a nationally representative study of non-institutionalized adults, it was shown that pre-lingually deafened adults had fewer doctor visits than those in the hearing population [15]. The communication barriers Deaf people face when trying to access the healthcare system likely underlie this lack of utilization [5], [13], [16], [17]. In addition, even when healthcare is utilized, such as preventive screening procedures, knowledge and attitudes toward these measures may still be lacking [5].
The current study set out to examine the cancer screening knowledge, attitudes, and behaviors amongst a socially and economically diverse group of culturally Deaf adults. The authors developed several research questions to drive their analyses. First, the authors wanted to determine the level of knowledge that Deaf persons have about specific cancer screenings. Second, the authors wanted to assess the proportion of Deaf respondents who receive age and gender appropriate cancer screening tests and compare those rates to those within the general United States population. Finally, the authors set out to explore Deaf patients’ attitudes toward specific cancer screening measures.
Section snippets
Methods
The details of designing and standardizing the survey instrument and the rationale of the survey are described in detail elsewhere [18]. In brief, Deaf patients were recruited from amongst Deaf clients seen in a general or mental health clinic at either of Chicago's two largest Deaf-serving health care systems (Sinai Health System (SHS) and Advocate Health Care (AHC)). In order to be eligible, a participant had to be an adult (≥18 years) and a Deaf client of either SHS or AHC who makes his/her
Results
As can be seen in Table 1, just over half of the respondents were female. The median age was 43 years, with 42% of respondents being between the ages of 18–39 years. Fifty-six percent of the respondents were non-Hispanic White, 29% were African American, and 10% were Hispanic. The majority of the respondents reported having gone to a mainstream school, half reported that their annual household income was $20,000 or less, and 54% of the respondents received some form of public insurance. Almost
Discussion
This study addressed the cancer screening knowledge, attitudes, and behaviors among culturally Deaf adults. The setting in which this study took place is unique as both SHS and AHC see many Deaf patients and offer special programs for this community including access to mental health professionals/doctors who are fluent in American Sign Language as well as interpreter services. The availability of such services for Deaf patients is rare and is in contrast to a study that cited very few Deaf
Conclusion
This study shows that persons within the Deaf community can have cancer screening rates similar to those of the US population. However, even in the presence of similar cancer screening rates and access to appropriate, quality care, Deaf persons may still be greatly lacking in their knowledge and purpose of these tests thus hindering their ability and right to make informed decisions about their body and their health. This finding is very worrisome and brings about ethical, health care quality
Conflict of interest
None declared.
Acknowledgements
The authors would like to thank the entire Project Team for their efforts in designing and implementing the survey and in interpreting its findings. This research was funded by the generous support of the Michael Reese Health Trust.
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