Health disparities have long been the experience for minorities in the US. The reason for this is a complex interplay between individuals and the society in which they live, which often contains barriers to obtaining health (Smith, 2012).
Similar to other minorities, many of the barriers to good health for the Deaf community exist because of communication difficulties (Kuenburg, 2016). However, there are differences that make the Deaf unique among minorities:
Similarly to other non-English speaking cultures, healthcare encounters are more effective when interpreters are present, but these are often expensive and have limited availability. Especially limited are ASL interpreters who have specialized training in medical terminology. Confidentiality may also be an issue when discussing sensitive topics such as sexual activity and abuse (Meador, 2005). Relatives of patients are often pressed into service as interpreters, but these have been shown to be unreliable and they may interpose their own judgement when communicating with the patient and healthcare providers. Even though the ADA mandates the use of interpreting services when needed, implementation has been problematic (Lesch, 2018),
Skøt et al. conducted semi-structured interviews with Deaf Danish who had experienced a traumatic event. Common themes that emerged included emergency responders and healthcare workers with little training or experience working with the Deaf, lack of interpreters and reluctance to use some interpreters due to privacy or compatibility issues, healthcare workers relying on patients' relatives to relay communications, lack of psychologists who were trained both in trauma counseling and working with the Deaf, and lack of support groups for the Deaf (Skøt, 2017).
There is broad agreement in the healthcare field that the best outcomes are obtained by practicing evidence-based medicine, which is based on a combination of research, clinician expertise, and patient preferences and values. Because evidence is often incomplete for the best screening and treatment methods for many common diseases such as cancer, it is up to clinicians to engage their patients in shared decision making (SDM) to determine the optimal course of action. Communication between practitioners and patients is critical to SDM, but often suboptimal for Deaf patients for the reasons described above. Kushalnagar et al. surveyed Deaf men in whom PSA screening for prostate cancer was indicated, and found that communication barriers were an obstacle to SDM on the subject (Kushalnagar, 2018). Druel et al. found evidence that Deaf patients were initially diagnosed with prostate and colon cancer at a more advanced stage due to difficulty with practitioner communication and SDM (Druel, 2018). Communication issues may also lead to lack of obtaining true informed consent, and Deaf patients simply accepting doctor's advice in order to avoid seeming unintelligent or belligerent (Lesch, 2018).
Beyond communication difficulties, the Deaf have an unique culture that is manifested by gestures, facial expressions and manners that are different from the larger hearing society in which they live. These cultural norms are generally not known by healthcare providers, and may lead to misinterpretation of Deaf patient's mental status and affect (Kuenburg, 2016; Fellinger, 2012; Gawad, 2018). The culmination of these cultural differences and communication difficulties lead to underutilization of healthcare services and dissatisfaction of providers by the Deaf.
The Deaf may belong to any other cultural group, many of whom have their own healthcare barriers and disparities. They may be a member of a disadvantaged ethnic minority group, a senior, a member of the LGBT community, or have a disability not related to hearing. Older Deaf may suffer from dementia, compounding communication difficulties (Young, 2018).
In many cases, the health of Deaf individuals is affected by the conditions that caused their hearing loss. These include various genetic conditions, such as Usher Syndrome, and infections, such as rubella (German measles), congenital cytomegalovirus (CMV), and meningitis (Fellinger, 2012; Barnett, 2011a). These factors compound the healthcare barriers and needs for many Deaf (Fellinger, 2012; Kuenburg, 2016).
In the US, good health is strongly correlated with employment status. Good jobs provide financial and other resources, such as health insurance, gym memberships, and crisis counselors. The Deaf community is chronically unemployed or underemployed compared to their level of educational achievement (Fellinger, 2012). Deaf women in particular are more likely than their hearing counterparts to rely on Medicaid or Medicare rather than private insurance and to have restricted access to providers who will take this form of payment (Lesch, 2018). Lower employment achievement leads to healthcare access barriers, lack of health insurance, and psychological illnesses (Smith, 2012).
The combined barriers described above have made the Deaf an invisible and neglected community, and led to health disparities compared to the hearing society in which they live (Smith, 2012).
There is a dearth of data on the health status of Deaf communities. This is due to several barriers:
The lack of data of the health of the Deaf hinders efforts to provide provide proper healthcare and health education. The data that do exist suggest that the health of the Deaf lags that of the US population as a whole (Barnett, 2011a). The Deaf are less likely to see a physician than adults in the general population, and report easier access using emergency rooms instead (Barnett, 2011a). When they do see doctors they may struggle to understand the information provided to them, especially if an interpreter is not provided (Lesch, 2018). Deaf women in particular may lack knowledge of basic sexual health and pregnancy (Meador, 2005). Deaf young adults have been found to lack knowledge about HPV, its relation to cervical cancer, and the HPV vaccine (Spellun, 2019). Greek Deaf reported worse health indicators, including obesity, tobacco and alcohol use, and physical activity than their hearing counterparts, and a lower quality of life (Tsimpida, 2018). Physicians in turn report significant difficulties in communicating with Deaf patients (Meador, 2005), particularly about complex issues such as palliative care that do not have precise ASL translations (Lesch, 2018) . Li et al. found that Deaf adolescents spend significantly more time in sedentary activities and less time performing physical activity than their hearing peers (Li, 2018).
Keogh et al. conducted a survey of Deaf students at Gallaudet University to determine their level of food security and its contributing factors. They found that 12.9% of the students had high food insecurity and an additional 26.4% were at-risk for food insecurity, similar rates to the general US college population. People who reported never receiving peer support were 16.3 times more likely to experience food insecurity than those who reported always receiving peer support (Keogh, 2018).
Moinester et al. apply a sociopolitical perspective in their analysis of the risk of HIV/AIDS in the Deaf community. They note that the actual rate of the disease in this population is unknown. It can be assumed that they are at high risk due having several risk factors:
Fellinger et al. (Fellinger, 2012) discuss mental health issues in the Deaf community. They note that the Deaf culture is difficult to access by the broader hearing society, leading to isolation and a lack of studies of their health issues. Nonetheless, available evidence indicates that mental health issues are more common among Deaf adults and twice as common among Deaf children. Mental health issues may be 4 times as common in Deaf children who have difficulty communicating with family members in their homes. High rates of sexual abuse in the Deaf children leads to mental health disorders throughout their life. There also appears to be higher rates of autism in Deaf children, although the diagnosis may be confounded by shared symptoms such as language delay and difficulty in social relationships.
Data are too sparse to determine definitively if the Deaf adult population is at greater risk for mental health disorders, although some studies have found this to be the case in specific populations for specific disorders. Differences in Deaf culture compared to the dominant hearing society, such as exaggerated facial expressions and gesturing, may lead to misdiagnosis of mental health disorders. There is a lack of validated methods for diagnosing mental disorders in the Deaf population, which may lead to misdiagnoses (Lesch, 2018). There is also a lack of resources such as trained counselors and grief support groups for the Deaf (Lesch, 2018).
Barnett et al. (Barnett, 2011b) describe their experiences with the administration of an ASL accessible survey using a community participatory approach with the Deaf population of Rochester, NY. The survey was based on the standard Behavioral Risk Factor Surveillance System. A computer interface was used to administer the survey in ASL and English on a touch-screen kiosk. 339 deaf adults completed a survey. Comparing their results to standard health surveys of Rochester residents, they found on the positive side that the Deaf had half the smoking rate of the community at large (9.1% vs. 18.1%). The other results were all negative, including higher rates of:
Druel et al. compared the stages of cancer upon initial diagnosis in French Deaf Units to that of the population as a whole. They found that of the 3 most commonly diagnosed cancers, breast cancers tended to be at a similar stage upon discovery but prostate and colon cancers tended to be significantly more advanced. They attributed this to the more complex screening guidelines of colon and prostate cancers compared to breast cancer, which requires significantly more communication between practitioners and their (Deaf) patients (Druel, 2018).
Rogers et al. (Rogers, 2018) discussed their findings during the course of validating a British Sign Language version of the Short Warwick-Edinburgh Mental Well-Being Scale (SWEMWBS). They found that their Deaf participants tended to report a lower mental well-being than the English as a whole, although this difference was just short of being significant. Participants who reported mental health difficulties (such as depression or anxiety) or being under the age of 66 and not being employed had significantly lower mental well-being scores.
As the health disparities experienced by the Deaf are due to a complex web of personal and sociopolitical factors, there will not be a simple solution that can solve this problem. Changes need to be made by schools, the healthcare system, public health institutions, and the political system. All such interventions much start with the foundation that the Deaf do not perceive themselves as disabled. Instead, they are a group that uses a different means of communication than the larger society in which they live. This means that the focus of interventions and policy must be on improving their health and not their hearing (Smith, 2012).
Deaf patients report fear, mistrust and frustration in healthcare settings. The topmost priority for helping the Deaf achieve better health is improved communication with healthcare providers and organizations. Communication should be in each patient's preferred method (Dammeyer, 2018). Deaf patients' files should be identified with an alert that informs all providers who interact with them what their preferred method of communication is. Registries of certified medical interpreters and contact information for companies that provide communication services for the Deaf should be readily available (Lesch, 2018).
Ideally, providers should be trained in ASL to avoid the complications posed by using interpreters (cost, lack of availability of interpreters trained in medical terminology, compromised patient confidentiality). Another approach is to develop programs to recruit, train, fund, and employ Deaf healthcare providers and researchers (Barnett, 2011a; Smith, 2012; Meeks, 2018). When this is not feasible, the increased use of medical specialty certified interpreters would lead to an improvement in healthcare encounter quality. Deaf patients have reported they appreciate attempts to improve communication, the provision of interpreters, and especially practitioners who know sign language.
In some cases, opening health centers specifically designed to serve the Deaf can lead to the provision of services that would difficult for separate community clinics to provide. Deaf people who attend clinics with full-time interpreters are more likely to receive preventive services (Barnett, 2011a) and have improved mental health outcomes (Fellinger, 2012). The French have opened 19 deaf care units (Unités d’Accueil et de Soins pour les Sourds) to better serve their approximately 51,000 Deaf population (Druel, 2018). The use of new technologies, such as video calls on cell phones and telemedicine services such as Video Remote Interpreting (VRI) and Video Relay Service (VRS), has the potential to alleviate some barriers to access to care for the Deaf (Kuenburg, 2016; Lesch, 2018). These strategies and the provision of ADA compliant devices, such as ones with visual and vibrating alerts, should be pursued beyond traditional healthcare settings into long-term care and hospice facilities (Lesch, 2018).
Takayama describes steps taken by Japanese Deaf support organizations to conduct a needs assessment and provide crisis counseling services to those affected by the Tohoku earthquake. It was 5 years after the event before many local Deaf received desperately needed services delivered in Japanese Sign Language, such as psychological services, case management, and group and grief counseling. Training to help local government emergency service workers provide culturally appropriate services to the Deaf during future disasters was conducted, and funding was secured to open a public support center for Deaf people (Takayama, 2017) .
In the public health sphere, improving communication means providing educational materials in a format that is accessible to the Deaf. This should take place both in schools and in the community. Examples of these would be classes and videos with ASL interpretation (Smith, 2012). There should also be English captions, tailored to a basic (4th grade) reading level. The availability of these materials would be beneficial to a wider audience beyond just the Deaf.
Another priority is obtaining accurate information on the health status, needs and preferences of local Deaf communities. This will require researchers to collaborate with community leaders and provide accessible surveys (Meador, 2005; Young, 2018). The informed consent process will need to be modified so that the participants will truly understand the purpose and risks of the study (Meador, 2005). Questions will need to be added to surveys to differentiate people who are hard-of-hearing from the Deaf, and to correlate physical abilities and past history to specific medical conditions and outcomes. Examples of these would include the degree of hearing loss, age when hearing was lost, quality of early family communication, presence of other health conditions, and type of school attended (Deaf or mainstream; Barnett, 2011a). Deaf public health workers should be recruited to train hearing providers how to provide culturally appropriate interactions with the Deaf, and public health conferences should be made more accessible to Deaf professionals (Barnett, 2011a).
Fontes Marx et al. found that South African Deaf women found were reliable and valid historians on their pregnancy history and related use of services (Fontes Marx, 2018).
The University of Rochester's Deaf Wellness Center is an example of how healthcare services for the Deaf can be improved. Founded in 1990, this center provides mental health services and health education for the Deaf. All of their staff members are fluent in ASL. There is a sliding fee schedule based on the client's ability to pay for services. It has also conducted some pioneering research on the health status of the Deaf using community collaborative methods. Their research projects have covered topics such as partner violence and depression in the Deaf community.
Cumberland et al. (Cumberland, 2018) describe a health education program designed to increase the knowledge of breast cancer and rate of obtaining a mammogram among a group of Deaf women over the age of 40. An intense effort was undertaken to make the educational materials and outcome measures culturally appropriate for the study participants. The intervention group received training specific for breast cancer, while the control group received more general cancer education. 197 women went through the program and 182 completed the 12-month follow-up outcomes. The program materials were well-received by the participants and intention to obtain a mammogram significantly increased in the intervention group. The percentage of women who had received a mammogram during the previous 12 months increased in both groups at the 12-month follow-up.
Havercamp et al. describe a pilot program that adapted Harvard University's Chronic Disease Self-Management Program for a group of Deaf participants. 2 Deaf volunteers with chronic health conditions were recruited to translate the program into ASL and lead a series of 6 weekly sessions. These were designed to be highly interactive and focused on improving knowledge of common chronic health problems, self-efficacy and self-management skills to maximize their functioning and ability to carry out normal daily activities. The 8 participants reported high satisfaction with the program, although this pilot study did not attempt to measure any improvements in their health literacy, self-efficacy or health (Havercamp, 2018).
Finally, political capital needs to be expended to change policies and laws to provide equality for the Deaf population. All discussions on these changes should include members of the Deaf communities that they affect (Lesch, 2018). For example, the ADA has lead to some progress in helping the disabled achieve better employment outcomes, but it has serious flaws that have prevented it from providing truly equal opportunity. First, companies must spend their own money on accommodations to allow the disabled to work for them. Second, employees must act as their own advocates. While they are trying to convince companies to hire them they also have to convince them to spend the money for accommodations. This is especially problematic for the Deaf with their communication barriers. A society fully vested in allowing the disabled to achieve parity in employment would provide government funding for all needed accommodations. While this would be expensive at first, it would save money in the long-term by lowering the public assistance needed by unemployed and underemployed disabled individuals (Smith, 2012).
Unfortunately, the anti-regulation zeal of the current Trump administration means that societal support for the Deaf will likely diminish instead of improving over the next few years. For example, the Department of Justice is currently attempting to undo regulations under the ADA and ACA that require healthcare facilities to obtain equipment that grants healthcare access to the disabled (Powell, 2018).