Deaf or Hard of Hearing Message Recipient Sociodemographic Characteristics
- Michael McKeeMichael McKeeDepartment of Family Medicine, University of Michigan
Hearing loss is common, with approximately 17% of the population reporting some degree of a hearing deficit. Hearing loss has profound impacts on health literacy, health information accessibility, and learning. Much of existing health information is inaccessible. This is largely due to the lack of focus on tailoring the messages to the needs of deaf and hard of hearing (DHH) individuals with hearing loss. DHH individuals struggle with a variety of health knowledge gaps and health disparities. This demonstrates the importance of providing tailored and accessible health information for this population. While hearing loss is heterogeneous, there are still overlapping principles that can benefit everyone. Through adaptation, DHH individuals become visual learners, thus increasing the demand for appropriate visual medical aids. The development of health information and materials suitable for visual learners will likely impact not only DHH individuals, but will also be applicable for the general population. The principles of social justice and universal design behoove health message designers to ensure that their health information is not only accessible, but also equitable. Wise application of technology, health literacy, and information learning principles, along with creative use of social media, peer exchanges, and community health workers, can help mitigate much of the health information gaps that exist among DHH individuals.
Approximately 17% (36 million) of American adults report some degree of hearing loss (National Institutes on Deafness and Other Communication Disorders, 2015), with the prevalence increasing with age. Twenty-five percent of those ages 65–74 years, and 50% of those 75 years and older, report hearing loss (National Institutes on Deafness and Other Communication Disorders, 2015). Yet, it is important to recognize that hearing loss is still commonly reported, even among younger aged groups, with 8.5% of individuals aged 20–29 reporting high-frequency hearing loss (Agrawal, Platz, & Niparko, 2008). These individuals, especially those with severe or worse hearing loss, are at high risk for information and social marginalization (McKee et al., 2015).
Health information is frequently distributed through auditory means, which places these individuals at risk for not receiving messages relevant to their health (McKee et al., 2015). Yet, we are undergoing a significant revolution on how information is accessed and learned from information technology. This change has also impacted the ability of deaf and hard-of-hearing (DHH) individuals to acquire health information, and provides unique opportunities to address existing information gaps in this population. The advent of participation-based technology allows for novel opportunities to help make the information more equitable for marginalized populations such as DHH individuals. Still, there remains much to do to improve our understanding on how we can best reach a heterogeneous DHH population effectively. Many designers and funders of health messages continue to be unaware of how hearing loss may affect and hinder the ability of certain individuals to receive their health messages. Fortunately, this is changing, partly due to recognition on the importance of addressing hearing loss in healthcare settings. The article reviews how DHH individuals are affected by their ability to acquire and learn health information. Deafness creates individuals who are more visually-oriented than their auditory-oriented hearing peers (McKee & Hauser, 2012), which requires tailoring information to be displayed in a visual manner. This approach has relevance even for the general population, especially among those who prefer visual learning approaches (McKee et al., 2015). The chapter has implications for health educators, healthcare providers, government leaders, policy makers, researchers, family members, and individuals with hearing loss. The article is designed not only to educate, but also to provide strategies to improve how we tailor and disseminate health information effectively for DHH individuals. We hope the information and strategies will increase the awareness of reaching out to this population, and will ensure that our health messages are designed to be more inclusive.
Background on Hearing Loss
Hearing loss is the third most common disability reported in the United States, and its prevalence is increasing rapidly. Hearing loss is heterogeneous. There are three types of hearing loss: sensorineural (i.e., sensorineural deafness), conductive (i.e., bone deafness), and mixed (a combination of sensorineural and conductive). Sensorineural hearing loss is caused by disorders or malfunction of the cochlea, auditory nerve, or areas of the brain involved in hearing. It is typically permanent, but often can be ameliorated to various degrees with amplification (e.g., hearing aids or cochlear implants). Conductive hearing loss is caused by problems encountered in the middle ear or external ear; these often are treatable (e.g., cerumen impaction) (Zazove, Atcherson, Moreland, & McKee, 2015). Hearing loss can also be assessed by other characteristics: age of onset, severity, laterality of hearing loss, and hearing thresholds (e.g., frequency). A DHH individual can also have varying sociodemographics (e.g., educational level), ideal accommodations, and language preferences (McKee et al., 2015). For example, the Deaf American Sign Language (ASL) community refers to deaf individuals who use ASL as their primary language and constitutes a group of individuals who identify themselves as a minority entity, with their own unique language and culture (Lane, 2005; Padden & Humphries, 2005). Deaf ASL users share a set of values, customs, attitudes, and experiences that differ from the hearing world (Meador & Zazove, 2005), and even from other individuals with hearing loss. Their language, ASL, contains its own syntax and language structure, which is distinct from English, and does not have a written form (McKee, Schlehofer, & Thew, 2013). As a result, information sources for ASL users may contrast from other individuals with hearing loss.
Hearing loss is a significant source of communication impairment in the healthcare setting (Bainbridge & Wallhagen, 2014; McKee et al., 2015). Reduced communication impacts the ability to effectively transfer health knowledge and promote understanding of the importance of certain management and treatment approaches (McKee et al., 2015). The Americans with Disabilities Act (ADA) (U.S. Department of Justice, 2011), and Section 504 of the Rehabilitation Act of 1973 (U.S. Department of Health and Human Services, 2006), provide mandates for healthcare to ensure accessible healthcare communication for DHH individuals, yet large disparities remain. There is often a misunderstanding in both the general hearing community, and in the medical establishment, about how to effectively communicate or share information with DHH individuals. For example, DHH individuals with speech-reading skills typically understand less than 30% of communication using lip-reading alone (Commission on Education of the Deaf, 1988; Nicholls, 1982). Furthermore, the use of simultaneous communication (speech and signing concomitantly) among signing DHH individuals results in subpar transmission of information due to competition for spatial and cognitive attention from two different communication techniques (Tevenal & Villanueva, 2009). The use of interpreters is the standard of care for most deaf individuals (i.e., those who sign), despite little known evidence of their effectiveness (Schick, 2008), especially for medical sign language interpreters. Prose literacy is also extremely poor in the deaf population, negating the note writing approach that some healthcare providers use to accommodate DHH individuals (Allen, 1986; Singleton, Morgan, DiGello, Wiles, & Rivers, 2004; Traxler, 2000; Zazove, Meador, Reed, & Gorenflo, 2013),
As a result, DHH individuals are at high risk for health knowledge gaps and significant health disparities. Margellos-Anast, Estarziau, and Kaufman (2006) found that deaf adults had poor knowledge of both heart attack and stroke symptoms. For example, 90% of respondents in a U.S. population-based survey listed chest pain as a heart attack symptom (Goff et al., 1998), yet only 49% of deaf respondents did so. Also, over 60% of DHH respondents could not list a single stroke symptom, which is twice the proportion of hearing adults (30%) who also failed to name a stroke symptom, in separate telephone surveys conducted in Ohio and Michigan (Margellos-Anast et al., 2006; Reeves, Hogan, & Rafferty, 2002; Schneider et al., 2003). This knowledge gap is dangerous, given that it impacts the potential behavior or willingness of these deaf individuals to contact emergency services. Nearly 40% of deaf adults would not call 911 or emergency services, even if they thought they were having a “heart attack or stroke” (Margellos-Anast et al., 2006). The DHH population also struggles with knowledge gaps in other areas, including sexual health (Bisol, Sperb, Brewer, Kato, & Shor-Posner, 2008; Heuttel & Rothstein, 2001; Job, 2004; Joseph, Sawyer, & Desmond, 1995; Smith, Massey-Stokes, & Lieberth, 2012), cancer, preventive health, mental health, and tobacco abuse dangers (Bain & Jaspers, 2004; Berman, Guthmann, & Sternfeld, 2007; Berman et al., 2007; Chandra & Minkovitz, 2006; Heuttel & Rothstein, 2001; Margellos-Anast et al., 2006; McKee, Barnett, Block, & Pearson, 2011; McKee, McKee, Winters, Sutter, & Pearson, 2014; Peinkofer, 1994; Smith et al., 2012; Tamaskar, Malia, Stern, Gorenflo, Meador, & Zazove, 2000; Wollin & Elder, 2003; Woodroffe, Gorenflo, Meador, & Zazove, 1998).
A variety of epidemiologic studies show that hearing loss is associated with poorer mental health, depression, lower cognitive function, and impaired activities of daily living (Wallhagen, Strawbridge, & Shema, 2008). More recently, hearing loss has been linked to increased hospitalization, falls, and mortality (Genther, Frick, Chen, Betz, & Lin, 2013). The estimated healthcare costs attributable to hearing loss are increasing rapidly and estimated to exceed $3 billion as of 2010 (Foley, Frick, & Lin, 2014). Additionally, DHH individuals may struggle with a number of co-morbidities, including learning disabilities, cognitive impairments, and other medical issues, that could affect their ability to receive and learn information related to educational materials (Knoors & Marschark, 2014; Marschark, Shaver, Nagle, & Newman, 2015). Despite the role hearing loss plays on one’s health and the ability to acquire health information, there are few large-scale health messages that are tailored to the DHH population.
Hearing Loss and Its Role on Health Literacy, Adaptation, and Knowledge Acquisition
Health literacy is defined by the Institute of Medicine as, “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (Nielsen-Bohlman, Panzer, & Kindig, 2004, p. 32). Health literacy, as opposed to disease knowledge, health behavior, preventive care, and medication compliance, has been the only factor that has been consistently demonstrated to have a direct effect on health outcomes (Cho, Lee, Arozullah, & Crittenden, 2008). Individuals with disabilities, limited English proficiency (LEP), or inadequate health literacy, have been found to be at higher risk for poor healthcare access, health communication, disease knowledge, and outcomes (McKee & Hauser, 2012; Sudore, Landefeld, Perez-Stable, Bibbins-Domingo, Williams, & Schillinger, 2009). Health literacy also appears to mediate the effects of socioeconomic status on health outcomes (Berkman, 2011), and influences the ability to navigate and access health information, especially online (Mackert, Champlin, Pasch, & Weiss, 2013). Furthermore, the American Medical Association has reported that poor health literacy is a stronger predictor of a person’s health than age, income, employment status, education level, or race (Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, 1999). The role that inadequate health literacy plays is of special importance for the DHH population, who struggle with reduced exposure to mainstream health information. In one study, 48% of deaf participants had inadequate health literacy, and deaf individuals were 6.9 times more likely than hearing participants to have inadequate health literacy (McKee et al., 2015). This is concerning given that inadequate health literacy is clearly recognized as a barrier to equitable and cost effective healthcare in the United States (Baker, Parker, Williams, & Clark, 1998; Berkman et al., 2004). Inadequate health literacy in this population is likely due to the inaccessibility of health information in media (e.g., radio and TV). Much of the media is not tailored to DHH individuals. Due to social and, in the case of deaf signers, language marginalization, DHH individuals resort to using online health information and/or peer-information exchanges more frequently than the general population (McKee, Schlehofer, Cuculick, Starr, Smith, & Chin, 2011; Valentine, Maruyama, Levy, Skelton, & Correll, 2006; Valentine & Skelton, 2009). However, it is unclear if they are able to access online health information, or other information sources as effectively as the general population.
Much of the health knowledge gaps highlighted above start at the onset of hearing loss. For those with congenital hearing loss, this interferes greatly in their ability to learn basic health information that many take for granted. For many children, initial health information is learned from their parents, or through health educational classes at school. Many DHH students do not get an equal number of health educational classroom hours, as a result of the schools’ focus in rectifying their communication and language gaps. Also, communication difficulties occur between many parents and their DHH children. There is a phenomenon called dinner table syndrome, in which DHH individuals watch close family members and friends converse with each other, but are unable to decipher the content of the conversation (Hauser, O’ Hearn, McKee, Steider, & Thew, 2010). This has an impact on the DHH individuals’ access to health knowledge. For example, the lack of incidental learning at home can have a negative impact on deaf individuals’ knowledge of family history. Also, parents do not appear to be a good source of health information for DHH youth. For example, Swartz (1993) found that 23% of hearing individuals learned about sex primarily from their mother, compared to only 2.9% of deaf individuals (Swartz, 1993). Furthermore, there remains much to learn on how late-onset hearing loss impacts the individual’s ability to learn and acquire health information.
As a result of hearing loss, a number of adaptive neurocognitive changes occur. For example, the cross-modal reorganization of the brain that takes place allows for these individuals to adapt and acquire information from other sensory (non-auditory) modalities (Kral, 2007; Kral & O’Donoghue, 2010). The brain’s auditory cortex becomes reassigned for other purposes, especially visual-related stimuli (Fitzpatrick, 2015; Sharma et al., 2009). This is a biological adaptation to increase one’s survival and response, in the absence or decrease of an auditory sense. For example, among individuals with congenital hearing loss, their peripheral visual attention appears to be enhanced (Bavelier, Dye, & Hauser, 2006), especially relative to motion. This may be useful to compensate for the auditory-based alarms or alerts. This allows them to be on the lookout for potentially dangerous objects, such as a predator, or a dangerous vehicle (e.g., horn honking). Another interesting point is that the visual cue of watching a person, in addition to listening, is still relevant for individuals with milder hearing loss, regardless of their speech-reading skill. For example, being able to see the face of a speaker can be the equivalent of a 1-decibel gain or improvement in speech perception in the presence of background noise (Helfer & Freyman, 2005; Tekin, Coughlan, & Simon, 2014).
Through adaptation, DHH individuals become visual learners. This results in dramatically different messaging and communication needs than what is commonly seen with the general population (McKee et al., 2015). However, it is important for message designers to understand that the ability to access information can be impacted by a variety of individual hearing loss characteristics, including the age of onset of hearing loss, laterality of hearing loss, hearing thresholds, language fluencies, educational level, and preferred mode of communication and learning (Marschark et al., 2015). DHH individuals may have additional characteristics such as peers or family environments and non-educational experiences that may play a role in how they receive and learn health information. In one study conducted by Marschark et al. (2015) hearing loss and communication variables explained the bulk of the variance between academic scores in four different subtests (i.e., reading, math, social studies, and science) between DHH and hearing secondary school students. More specifically, the severity of the hearing loss (i.e., mild to profound hearing loss) and the level of communication difficulties that the student had were the most relevant predictors of academic success. Other important academic success predictors were the presence of other disability co-morbidities (e.g., learning disabilities), and demographic variables, but these were not as strong as hearing and communication variables. The primary focus for educators is to ensure that DHH students establish early and effective communication and language skills to maximize their ability to acquire and learn information throughout their life course.
Due to the reduced access to information in both formal and informal settings, it is not surprising that DHH students lag behind hearing students in educational achievements (Marschark et al., 2015). Educational research focused on children with hearing loss has found that DHH students require a number of different instructional approaches and information modalities (Bavelier et al., 2006). The majority of existing educational environments are designed for an audiovisual learner, not a more solely visual learner. Educational gaps are created by different internal and external factors (see Table 1). Reading literacy can be also affected by hearing loss. Prose literacy is also extremely poor in the deaf population and reduced among individuals with milder hearing loss; the average deaf high school senior reads English at the 4th to 6th grade level (Allen, 1986; Singleton et al., 2004; Traxler, 2000; Zazove et al., 2013), while other studies estimate that DHH adults attain near 6th grade reading level (Zazove et al., 2013). The lower prose literacy affects the ability to read and navigate online. It also can affect the ability to use appropriate keywords with search queries. The low prose literacy, especially among individuals with congenital hearing loss, is likely a result of late or poor quality access to language development. Hearing loss can interfere with decoding skills, a fundamental skill for reading. This is due to difficulties in phonologic processing, vocabulary, sentence structure, and conversation (Geers & Hayes, 2011; Moeller, Tomblin, Yoshinaga-Itano, Connor, & Jerger, 2007; Perfetti & Sandak, 2000).
Table 1. External + Internal Factors on Learning for DHH Individuals
Mode of Information Dissemination
Definition: Information varies how they are disseminated. For example, information on the radio is shared through auditory-verbal means. The use of videos may include both visual and/or auditory based information. The choice of how information is delivered is important to tailor for DHH individuals.
Visibility of the Information
Definition: Information visibility is based on how well the information is distributed or known. This refers to the level of penetrance into the DHH community. This is a potential tool to assess the ability of a health outreach to get to target populations.
Level of Community Input on Information
Definition: The degree of community input as to how the information is generated and shared. Community feedback is important to ensure the likelihood that important information is shared appropriately (e.g., use of captioning to videos) and easy to understand.
Definition: Parental educational attainment level. This is a strong predictor of children’s educational outcome. Higher educated parents often contribute additional resources (e.g. coverage of tutoring services) towards the child and provide greater support for the child’s successful language and educational development.
Language Modality and Preference
Definition: Preference for language(s) and how it is communicated. Language modality may vary from visual-manual communication methods (e.g., sign language) to auditory-verbal based (e.g., use of spoken language and/or hearing amplification). Language preference may include the choice of being monolingual, only spoken English, vs. bilingual, use of both sign language and English.
Severity of Hearing Loss
Definition: The degree of the hearing loss. This may range from mild to profound hearing loss. The severity of the hearing loss will affect how the information is learned. The more severe the hearing loss is may require the incorporation of specific accommodations and/or different language/communication preferences to help offset any barriers to learning.
Age of Hearing Loss Onset
Definition: Age of when the hearing loss occurred and diagnosed. For example, this may be before language development (prelingual) or at a much later age (e.g., presbycusis). Hearing loss at different ages require different strategies to learn new information.
Definition: Type of accommodation chosen to assist with the hearing loss. This may include options such as sign language interpreter or closed captioning. Appropriate accommodations improve access to information.
Hearing Amplification Type
Definition: Amplification types may include hearing aids, cochlear implants, FM systems, or even a combination of the above. The use of appropriate hearing amplification has been shown to be helpful with language and educational development in early interventional programs.
Reading and Health Literacy
Definition: Level of reading proficiency (reading literacy). Ability to seek out, find, evaluate and appraise, integrate, and apply what is learned to make appropriate health decisions (health literacy). Hearing loss places individuals at higher risk for lower reading and health literacy.
Incidental and Informal Learning and Hearing Loss
Incidental learning can be best described as not intentional learning, whereas informal learning is learning that happens outside of an externally-shaped curricula. Incidental learning is largely subconscious, whereas informal learning usually occurs outside of a formal learning objective or class (Marsick & Watkins, 2015). An example of incidental learning is when a person overhears other colleagues discussing a new medication that may reduce the risk of heart disease. This type of learning is accidental or unplanned (random). Informal learning is still considered intentional. Using the example above, the same person conducts an online search for this new medication and reads a scientific study that assesses the potential benefits of this medication on heart disease risk. The person deliberately tries to learn information related to this example yet it is not in a structured learning environment (such as a webinar). These types of learning can be affected by hearing loss and by language barriers, especially among those who communicate in sign language (McKee et al., 2015). Furthermore, hearing difficulties resulting in decreased incidental learning impacts the development of conceptual knowledge, known to be associated with reading comprehension (Fitzpatrick, 2015; Robertson, 2013). For example, DHH children are exposed to fewer opportunities to benefit from incidental learning, from group conversations, or obtaining information in a fast-paced classroom environment (Fitzpatrick, 2015). The loss of incidental and informal learning is hypothesized to be a significant driver for inadequate health and reading literacy (McKee et al., 2015). Furthermore, many DHH report social isolation and loneliness (Johnson, Newman, Danhauer, & Williams, 2009). Being ostracized can affect the DHH adult’s ability to learn. A number of adult learning theories highlight the role of social interaction with others for an individual’s learning (Papen, 2012). According to Illeris (2002), there are three critical dimensions of the learning process: society, cognition, and emotion. Learning is enhanced when it is shaped by the context in which it takes place (e.g., healthcare clinic), and is influenced by, and often accomplished together with others (Papen, 2012). This learning style among adults is still mostly informal and self-directed, quite different from most children who learn primarily in formal educational environments (Papen, 2012). Many DHH individuals who may not have the appropriate social network or support may miss out on these opportunities.
Importance of Health Information Access and Sources
With a variety of communication barriers, DHH individuals incorporate a variety of coping strategies to address the information inaccessibility (McKee & Hauser, 2012; McKee, Schlehofer et al., 2011). Many DHH individuals frequently resort to online health information sources to improve their understanding and make healthcare decisions (Valentine et al., 2006). However, the degree of their comprehension of current online health information, and ultimately how this impacts DHH individuals’ health outcomes, has not been examined. Furthermore, there are very few health educational programs or online health information accessible in American Sign Language (ASL). The few websites that provide ASL health videos, such as Deaf Health.org, Deafdoc.org (Stern & Spanjer, 2014), and Medline Plus’ Health Information in ASL (U.S. National Library of Medicine, 2014a), are limited in scope and topics. For example, Medline Plus, a federally sponsored health education website, with educational material on more than 900 diseases and conditions in English, used to have only 26 brief topics available in sign language before they were discontinued as of January 2015. Indeed, many other language groups with populations smaller than ASL users have more health topics in Medline Plus (e.g., 90 health topics in Tagalog; U.S. National Library of Medicine, 2014b), and are still currently active. In addition, the Medline Plus ASL-based videos were presented in a factual form, not in a dialogue or narrative format, which has been shown to be more effective in promoting greater understanding among the deaf signers (Austvoll-Dahlgren et al., 2013; Barnett, McKee, Smith, & Pearson, 2011; Pollard, Dean, O’Hearn, & Haynes, 2009).
Despite the lack of accessible websites, approximately 79% of DHH individuals use the Internet daily (versus 59% of hearing individuals) and are almost three times more likely to search online for health information than their hearing peers (Valentine & Skelton, 2009). When it comes to navigating the Internet, DHH individuals display competency navigating visual targets, but struggle with categorical decision-making to make a more refined search (Fajardo, Abascal, & Canas, 2004). Most online health information requires more categorical decision making due to the level of semantics and textual-based graphics. A particularly important point for health message designers to be aware of is that DHH individuals with lower web-based skills were doubtful of their ability to find high quality online information, and those who did generally discovered information that merely confirmed misinformed beliefs, rather than correcting factual errors (Carter et al., 2013; Feufel & Stahl, 2012). It is unclear what proportion of DHH individuals have the skills to effectively navigate the Internet to access high quality online health information, and how this affects their beliefs, health behaviors, health, and healthcare utilization. Healthy People 2020 has a clear objective to utilize health communication strategies and health information technology to improve population health outcomes, healthcare quality, and to achieve health equity (U.S. Department of Health and Human Services).
Peer Information Exchanges
Certain DHH communities are cohesive, frequently out of necessity. For example, the deaf signing community greatly values sharing and disseminating information and acquired knowledge with others to overcome information deprivation (Padden & Humphries, 2005). This may be partly in response to the challenges of acquiring information from a hearing mainstreamed society. For example, in the case of HIV during the early 1990’s, experts determined that the deaf population was about eight years behind the hearing population in HIV knowledge and awareness (Gaskins, 1999). To compensate for the information marginalization, one study demonstrated that deaf individuals were seven times more likely than their hearing peers to receive information about HIV/AIDS from their friends (Bat-Chava, Martin, & Kosciw, 2005). This peer exchange, also called the “deaf grapevine,” can be an effective means of disseminating information and resources for the community; however, if not balanced by other health information resources, it can lead to misunderstandings and gaps in knowledge, confidentiality problems, and reluctance by some individuals to use needed services. This occurred frequently with HIV-related information. Some of the HIV-based inaccuracies included that an individual can determine if someone is HIV-positive merely by looking at the individual (“healthy appearing” vs. “ill-appearing”). There were also misunderstandings on how HIV was acquired, such as “toilet seats or touching.” This is why health information needs to be both accessible and easy to obtain, to be able to correct any misinformation or myths (McKee, Schlehofer et al., 2011).
Emergency Preparedness and Response
Emergency preparedness and response efforts infrequently reach out to DHH individuals and communities effectively. This is due to the nature of the information dissemination being largely audio-based (Neuhauser et al., 2013). For example, during Hurricane Katrina, more than 80% of TVs that shared emergency information failed to display closed captioning, leaving a large population of DHH constituents at risk of not being informed about emergency responses and shelter-based information (Lim, Mazurek, Updike, & Macgregor-Skinner, 2014). As a result, individuals with disabilities, including those who are DHH, are vulnerable during times of emergencies and are victimized up to 7 times more than the general population (Lim et al., 2014). Special needs populations and individuals with disabilities are infrequently thought about or mentioned when someone refers to emergency preparedness. A study pertaining to DHH specifically illustrates that out of 55 emergency operation plans reviewed, a little over half mentioned vulnerable populations, whereas only 31% specifically mentioned DHH in their plan (Lim et al., 2014).
It is clear that greater attention to how emergency information is disseminated effectively is needed. The good news is that there are a variety of efforts being put in place to try and remedy the gaps. Several counties are implementing text-based alert systems to notify DHH individuals of an emergency through their mobile phones (American Red Cross, 2016). The incorporation of mobile phones and text-based technology is yet another example of how technology can provide visual cues (or aids) for those who need it. The Red Cross has recognized that this is a vulnerable population, and has provided a brochure and a web page, Preparedness for the Deaf, with different types of emergency responses for DHH individuals.
Role of Social Media
Facebook and other social media networking sites have created numerous opportunities for DHH individuals to connect with others, and also learn what is being commonly discussed within the websites (or world). This technology, along with smartphones, appears to have brought new communication approaches that may reduce the existing information and communication gap. It is possible that the implementation of these technologies may moderate some of the information and knowledge differences between the hearing and the DHH (Chang, 2014). Arthur (2009) suggested that “technology has obvious promise for [people with disabilities],” and new media communication technologies might bring new communication opportunities to bridge the communication gap between these two groups (Arthur, 2009, p. 9). Perhaps the new forms of media and the advent of mobile technologies have changed to allow new possibilities for richer communication experiences between DHH and hearing people. Social media and the Internet provide an accessible medium for communication that provides an opportunity to exchange practical information and support, as well as to experience accepting, less prejudiced relationships (Shoham & Heber, 2012). The Internet provides an attractive communication avenue for many DHH people, since it allows them to develop new relationships with other hearing individuals that would not have taken place previously (Valentine & Skelton, 2009). This has broken down much of the marginalization and discrimination that previously existed before social media and Internet communication and has had an empowering effect for many of the DHH individuals using these modalities (Barak & Sadovsky, 2008). Furthermore, social media and online forums provide important sources of information that they otherwise would miss in the real world (Shoham & Heber, 2012).
Tailored Message Designs for DHH Individuals
There is an increasing number of health literacy and communication strategy-based papers for those with communication disorders (Nutbeam, 2000). Many of these approaches are useful for health messaging designs for DHH individuals. Universally, many health information and health communication researchers agree that the health messages need to be simplified to make them more accessible. Given that prose literacy is relatively low for DHH individuals, effort to present health information at a 6th grade or lower reading level is paramount (McKee et al., 2015; Zazove et al., 2013). Both the American Medical Association (AMA), and the National Institutes of Health (NIH), recommend that healthcare materials be written between 4th- and 6th-grade reading levels (U.S. National Library of Medicine, 2016; Weiss, 2007). Unfortunately, most of the online health information, including standardized patient educational materials, is well above this. In one study conducted by Balakrishnan, Chandy, Hseih, Bui, and Verma, (2016), patient educational materials related to vocal cord paralysis ranged from the 9th grade to 17th grade level.
Furthermore, the content and relevance should be clear (e.g., purpose of the message) (Yorkston, Bourgeois, & Baylor, 2010). For example, individuals with inadequate health literacy have difficulty using keyword-based search interfaces that many of our search engines depend on (Agree, King, Castro, Wiley, & Borzekowski, 2015). Individuals with low health literacy struggle in locating relevant health information, and may have longer fixation duration on irrelevant aspects of displayed information (Mackert et al., 2013). The organization of the information could incorporate reading guides, such as arrows, or the use of bullets and subheadings. Graphics and illustrations, if clear and used appropriately, can be a great help to those who may not have as high proficiency in English literacy or reading. This can help with the navigation challenges that many of the DHH individuals with inadequate health literacy struggle with.
The use of videos is increasing dramatically in a variety of websites, including health-based informational websites. However, the majority of health-based videos are not captioned or presented in ASL. The use of captioning provides multiple benefits, even for those who are hearing. For example, videos with captioning can be used by viewers who prefer to read the captioned text rather than listen to the audio. This may be due to the need for a quiet learning session (e.g., in a public area). Also, captioning provides the ability for Internet searches to link these videos to certain search queries. YouTube videos frequently have Google beta captioning options, but these rarely are sufficient and are fraught with errors. Even among deaf signers, they prefer videos to have captioning be an option for them (Kushalnagar et al., 2015). Captions (or transcripts) should be the standard for all publicly available health information that includes audio or video content.
Legal Requirements of Accessible Online and Video-Based Information
The National Association for the Deaf, a national civil rights organization for DHH individuals in the United States, strongly advocates for captioning of all audio and audiovisual information and material, regardless of distribution method. Like television programs and movies 25 years ago, video programs on the Internet are generally not accessible to DHH people. Yet change is slowly occurring, captioning is becoming easier and cheaper. The Web Accessibility Initiative of the World Wide Web Consortium was agreed upon by many notable companies such as AOL, Google, Microsoft, and Yahoo! (Murphy, 2013). This Web Accessibility Initiative established guidelines for making websites accessible, including providing captioning (Murphy, 2013). The 21st Century Communications and Video Accessibility Act (“CVAA”) also mandated that electronic video devices that receive or display video programming transmitted simultaneously with sound, including those that can receive or display programming carried over the Internet, be able to display captions under the previously passed Television Decoder Circuitry Act (National Association of the Deaf, 2016). This has been expanded to include online video streaming companies such as Netflix. In 2014, Netflix moved forward to ensure that all of their videos include captioning options (Griffin, 2016).
Amendments to the Rehabilitation Act of 1973 have led to further expansion of the law’s reach into the Internet. Section 508, signed into law in 1998, included a focus on ensuring equal access to electronic and information technology. This law covers access to federal programs and services, including online sources. This law expects that these programs and services provide an alternative, accessible, information technology avenue for individuals with disabilities, including those who are DHH (3PlayMedia, 2016; Murphy, 2013). The list below outlines standard web accessibility criteria that can be applied to online websites and video content:
Text equivalent shall be provided for every non-text element.2.
Equivalent alternatives shall be provided for any multimedia presentation, synched with the presentation.3.
Information conveyed with color must also be made available without color.4.
Documents shall be readable without an associated style sheet.5.
Text links shall be provided for each active region of a server-side image map.6.
Client-side image maps shall be provided instead of server-side image maps, except where the regions cannot be defined with an available geometric shape.7.
Row and column headers shall be identified for data tables.8.
Markup shall be used to associate data cells and header cells for data tables with two or more logical levels of row or column headers.9.
Frames shall be titled with text that facilitates frame identification and navigation.10.
Pages shall be designed to avoid causing the screen to flicker (frequency 2 Hz–55 Hz).11.
A text-only page, with equivalent and up-to-date information, shall be provided when compliance cannot be accomplished in any other way.12.
When utilizing scripting languages to display content or to create interface elements, the information provided by the script shall be identified with functional text so that it can be read with assistive technology.13.
When a web page requires that an applet, plug-in, or other application be present to interpret page content, the page must provide a link to a plug-in or applet.14.
Electronic forms shall be designed to allow people using assistive technology to access the information, field elements, and functionality to complete and submit the form, including directions and cues.15.
A method shall be provided that permits users to skip repetitive navigation links.16.
When a timed response is required, the user shall be alerted and given sufficient time to indicate more time is required.
Universal Design Principles and Health Information
Universal design ideology is based on the design of technology, products, and environments that are to be available and usable by all people to the greatest extent possible, without any further modification of the design. It is based on a principle of inclusion, regardless of the individuals’ age or disability (Mace, 1998). While the universal design ideology has been around for some time, its application to DHH individuals is relatively recent. Efforts are underway to expand the design principles in educational arenas at locations such as the DeafTEC program at the National Institute of Technology for the Deaf (National Technical Institute for the Deaf, 2015). The goal is to apply a universal design to benefit DHH students to improve the quality of their educational experience, while also expanding their access to classroom-based information. Many educators are including technology as part of their teaching repertoire. Yet, if not carefully thought through, the incorporation of technology may in fact, add another layer of difficulty or barrier for DHH students and learners. Educational videos or materials that require watching something while listening to an explanation about it could backfire for DHH individuals. It is important that dual task performances (both hearing and seeing) must be minimized as much as possible to ensure that the materials are accessible for DHH individuals. According to Darroch and Castle, 2005, there are several key steps to ensure that the educational and/or learning materials are universally accessible (Darroch & Castle, 2005). Learners should drive the instructional delivery materials. Course learning objectives should be clearly stated, and laid out to allow for the learner to make the necessary preparations and decisions regarding the educational content. There should also be flexibility on the methods of engagement for the learner. Educators should also provide additional auxiliary aids, such as interpreters, to be part of the delivery of the proposed materials.
In healthcare settings or educational programs, the use of a patient education materials evaluation tool (PEMAT) (Balakrishnan et al., 2016), can be useful to determine its appropriateness for the DHH population. This can be applied to large-scale public health and mass media campaigns. Areas of concern can be further modified to enhance their inclusion of the messages to make it more suitable for vulnerable populations.
Increasing Information Accessibility Via Novel Technologies and Approaches
The use of avatar or computerized conversational agents to facilitate health information searches or education can be a novel approach to the standard web-based format that many individuals struggle with. Bickmore, Utami, Matsuyama, and Paasche-Orlow (2016), found that subjects preferred the conversational agent and felt the agent assisted in finding critical information regarding clinical trials that met their criteria, versus a more traditional, web-driven conventional interface. Avatars can also be designed to be multilingual, and can even include signing avatars that are accessible to Deaf signers. There are several efforts to develop these programs. Some of the more recent signing avatar systems are provided through VisiCast, SignSmith, Say It Sign It, LATLab, and SignCom (Clymer, Geigel, Behm, & Masters, 2012). These tools provide future opportunity to address the information gap and incorporate technology in the form of avatars, to assist with information navigators and even translators. At this time, the signing avatars are still largely experimental and need further refinements. Yet, the technology is nearing the potential to be used for short educational purposes (~5–10 minutes in duration). SignSmith is currently commercially available for curriculum-specific, tailored, signing-based programs (Vcom3d, 2014). An example of their work is available for viewing online.
Community health workers are another effective resource for health information exchange tools for vulnerable populations, including those with limited English proficiency. Minnesota is the first state to have DHH community health workers to assist their communities. The Minnesota Community Health Worker Alliance was designed to help DHH individuals navigate the healthcare system more effectively, while reducing potential medical errors, miscommunication, and promote greater healthcare provider-patient trust (Deaf Community Health Workers, 2014). The challenges with these programs are both educating healthcare professionals and systems about the benefit of them and ensuring a sustainable funding mechanism to ensure their long-term survival. These programs provide an element of disability awareness and cultural brokering that is currently absent among healthcare providers. This can also be expanded to ancillary healthcare staff, which can be trained to address the specific health information and care needs of the DHH patient population.
The expansion of health messages to become more inclusive to nearly 20% of Americans who struggle with hearing loss is a simple matter of social justice. The principles of accessibility, universal design, and inclusion are achievable, but will require careful thought on how information-based technology and message designs are applied to this group. It is also important that we engage DHH individuals into large-scale health message campaign developments to elicit their insight on how to improve the tailoring and accessibility of relevant health information. These efforts can set a standard for other institutional-based health information and/or patient educational materials. Last, greater advocacy is needed to ensure that there are adequate support and resources to initiate the above changes. The tailoring of health information and messages for DHH individuals can potentially result in significant reduction of existing health knowledge gaps and disparities.
Discussion of the Literature
Hearing loss is the third most prevalent disability, yet there remains a large gap in the literature on how hearing loss alters one’s ability to access health information and messages. Access to information exerts powerful influences on people’s daily lives, including their behavior, education, work, and social lives. Any impact on an individual’s ability to access and comprehend information can play important roles in their health. Information-based technology is expanding rapidly, but we need to ensure that this technology helps break down barriers, rather than erect additional ones for individuals with hearing loss. Fortunately, there are exciting options already available, or soon to be made available. The use of signing virtual agents, or navigators complete with captioning, provides unique avenues to accessorize information that was previously challenging to obtain. Digital translators are improving in their quality, and soon will be a useful tool to convert audio messages into visual ones. This can help individuals with hearing loss access radio broadcasts, for example. These translator-based tools will also reduce information and social marginalization among deaf ASL users. Much of these efforts will carry over to assist other groups in need, such as language minority populations.
Individuals with hearing loss vary in their preferences. There is no one-size-fits-all approach, so there needs to be flexibility as to how the information is disseminated. Developers of health information outreaches should be familiar with principles of health literacy, accessibility, and universal designs, when they construct their programs. Effective tailoring of messages also depends on the ability to receive feedback from individuals with hearing loss. Platforms such as crowdsourcing (e.g., MTurk) can provide an opportunity for a developer to obtain feedback from individuals from specified backgrounds of interest such as hearing loss. Community-based feedback can also occur through social media. This can help minimize poorly designed and inaccessible health outreaches. While technology provides unique opportunities, health message designers should not ignore the roles that peer exchanges and community health workers can play in reducing health information gaps that currently exist among individuals with hearing loss.
For those who are interested in learning more about the deaf community and its culture, language, and sense of belonging can refer to the following readings.
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- Padden, C., & Humphries, T. (2005). Inside deaf culture. Cambridge, MA: Harvard University Press.
Hearing loss is a common source of communication and healthcare delivery barrier, yet many healthcare providers fail to recognize the impact it may have on one’s health. Below is a list of recommended readings to understand how hearing loss and health intersect.
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