The Deaf Community's Experiences Navigating COVID-19 Pandemic Information

Abstract

The arrival of the novel coronavirus disease 2019 (COVID-19) to the United States in early 2020 disrupted large sectors of the country. Despite the large number of government and public health announcements related to COVID-19, access to relevant information was inconsistently and unevenly disseminated, placing certain groups in greater jeopardy (Abuelgasim et al., 2020; Piller et al., 2020). One particular group, American Sign Language (ASL) users who are deaf, due to its linguistic isolation (McKee, Paasche-Orlow et al., 2015), struggled to attain information about COVID-19 (Murray, 2020). People who are deaf often face barriers receiving health information, contributing to significant gaps in health knowledge with disparities in preventive health (McKee, Barnett et al., 2011; Tamaskar et al., 2000; Wollin & Elder, 2003), sexual and reproductive health (Bat-Chava et al., 2005; Heiman et al., 2015; Horner-Johnson et al., 2020; Sawyer et al., 1996), cardiovascular disease (Margellos-Anast et al., 2006; McKee, Schlehofer et al., 2011), and cancer (Berman et al., 2013; Zazove et al., 2009).

The American Medical Association (Weiss, 2007) and U.S. Department of Health and Human Services (2010) recommend that health materials be written at a fifth to sixth grade reading level, yet the average reading level for medical information on common internal medicine diagnoses on the internet often exceeds a tenth-grade level (Cotugna et al., 2005; Hutchinson et al., 2016). Specifically, COVID-19 information online ranges between 8.8 and 20.1 grade reading levels (Szmuda et al., 2020), creating further challenges for the average adult who is deaf, who reads English at the fifth to sixth grade level (McKee, Paasche-Orlow et al., 2015; Singleton et al., 2004; Traxler, 2000; Zazove et al., 2013). Adults who are deaf are more likely to have inadequate health literacy (McKee, Paasche-Orlow et al., 2015), which is the ability to find, understand, evaluate, and use health information and services needed to make appropriate health decisions (Coleman et al., 2008; Ratzan & Parker, 2006). These challenges may complicate the deaf community's ability to access and/or comprehend COVID-19 information, even if written or captioned.

Our study's primary objective was to compare COVID-19–related information access between deaf participants who used ASL and participants who can hear. The study's secondary objective was to compare COVID-19 knowledge (identification of accurate symptoms, preventive strategies, and planned health care navigation) between deaf participants who used ASL and participants who can hear.

Method

Survey

The telephone survey initially had 11 multiple choice, Likert scale, and open-ended questions including COVID-19–related behaviors such as testing and prevention, knowledge, and access to information. Some questions were derived from the Kaiser Family Foundation's Coronavirus Poll (Hamel et al., 2020). The remaining questions were constructed and tested by the research team for flow and understandability. The survey was amended to add six questions related to risk perception, COVID-19 testing, and health care access beginning in May 2020, 1 month after data collection began, bringing the total number of questions to 17. The change was made to capture additional items as the COVID-19 pandemic evolved; however, these updated items are not included in the analyses for this article. The complete survey can be seen in Figure ​FigureAA. Questions that asked about techniques for COVID-19 prevention and identification of symptoms were open-ended to gain a true assessment of the respondent's knowledge about the topic.

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Figure A.

Coronavirus disease 2019 survey.

The survey items were translated into ASL through an iterative and collaborative process by interviewers on the team (J.C., D.P., T.L.P.) who are native ASL signers. Once consensus on how to best translate the written question into ASL was reached, the ASL gloss (written form of ASL) was added to the English survey for consistency across interviewers, a process similar to what Margellos-Anast et al. (2005) had done.

Results

A total of 178 adults, including 104 ASL users who are deaf and 74 people who are hearing (see Table ​Table11 for group demographics) completed the survey. Analyses revealed participants who are deaf were more likely to be older (p = .005), white (p = .014), and Hispanic (p = .006) when compared to participants who are hearing. The deaf and hearing groups did not differ based on gender (p = .651), income (p = .188), or education (p = .556). Participants who are deaf were more likely than participants who are hearing to have risk factors for inadequate health literacy (61% vs. 23.0%, p < .001).

Table 1

Respondent Characteristics by Group

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Characteristic	Deaf (N = 104)	Hearing (N = 74)	p Value (χ2)
	n (%)
Age, M (SD)	44.1 (15.5)	36.9 (17.8)	.005a
Site			.011
Site 1 (Rochester, NY)	39 (37.5)	42 (56.8)
Site 2 (Flint, MI)	65 (62.5)	32 (43.2)
Gender			.651
Female	64 (61.5)	48 (64.9)
Male	40 (38.5)	26 (35.1)
Race/ethnicityb			.014
White	88 (85.4)	52 (71.2)
Hispanic	10 (9.6)	0 (0)	.006
Black	7 (6.8)	16 (21.9)
Asian, Indian American, Biracial	8 (7.8)	5 (6.9)
Incomeb			.188
<$20,000	27 (29)	19 (31.1)
$20,000–$50,000	34 (36.6)	14 (23)
$51,000–$75,000	16 (17.2)	10 (16.4)
>$75,000	16 (17.2)	18 (29.5)
Education			.556
HS diploma or GED or less	28 (26.9)	20 (27)
College 1–3 years	31 (29.8)	17 (23)
College 4 years or more	45 (43.3)	37 (50)

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Note. GED = general educational development; HS = high school.

^at-test.

^bSome participants did not answer all questions, so total sum numbers and percentages may not match.

COVID-19 Information Access and Sources Used

Twenty percent of participants who are deaf reported having difficulty accessing information regarding COVID-19, which was significantly higher than participants who are hearing (5.5%; p = .005). When controlling for race, age, and health literacy, participants who are deaf had 4.6 times higher odds of reporting difficulty in accessing COVID-19–related information than participants who are hearing (p = .013) (Table ​Table22). When asked about specific challenges in getting information about COVID-19 (Table ​Table33), participants who are deaf were more likely to report trouble accessing (see/watch/hear) information compared to participants who are hearing (26% vs. 2.7%; p < .001), more likely to find the information scary (76.9% vs. 27.0%; p < .001), and more likely to mistrust the information (61.5% vs. 41.9%; p = .010). However, both groups of participants equally found COVID-19 information difficult to understand (26% vs. 19%; p = .27). Overall, of the five specific barriers queried, respondents who are deaf reported more COVID-19 information challenges than respondents who are hearing (mean [standard deviation] = 2.5 (1.5) vs. 1.2 (1.1); p < .001). Regarding information source, participants who are deaf were more likely to report getting their information from television/news (86% vs. 54%; p < .001) and social media (90% vs. 57%; p < .001) than their peers who are hearing.

Table 2

Logistic Regression for Trouble Accessing COVID-19 Information

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Characteristic	Odds Ratio [95% CI]	p Value
Group
Hearing	Reference
Deaf	4.64 [1.38, 15.54]	.013
Newest Vital Sign
Adequate	Reference
At risk	4.36 [1.21, 15.77]	.025
People of color	2.11 [0.71, 6.25]	.179
Age	1 [0.97, 1.04]	.960
Site
Site 1 (Rochester, NY)	Reference
Site 2 (Flint, MI)	0.09 [0.02, 0.35]	<.001

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Note. CI = confidence interval

Table 3

COVID-19 Information Access Challenges by Group

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Deaf and Hearing Groups	Deaf (N = 104)	Hearing (N = 74)	p Value (χ2)
	n (%)
Information is difficult for me to access (see, watch, or hear)	27 (26)	2 (2.7)	<.001a
Information is not available in my language	37 (36.6)	0 (0)	<.001a
Information is hard to understand	27 (26)	14 (18.9)	.271
Information is too scary	80 (76.9)	20 (27)	<.001
I don't trust the information	64 (61.5)	31 (41.9)	.010
Other	23 (22.1)	22 (29.7)	.249
None	4 (3.9)	26 (35.1)	<.001
Mean (SD)	2.5 (1.5)	1.2 (1.1)	<.001b

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Note. COVID-19 = coronavirus disease 2019.

^at-test.

^bExact test.

COVID-19 Knowledge and Behavior

Respondents were able to correctly identify, on average, 3.3 (SD = 1.2) COVID-19 symptoms, which was not different between people who are deaf and people who are hearing (p = .76). Respondents who are deaf mentioned using more preventive strategies (mean = 3.3, SD = 1.1) than respondents who are hearing (mean = 2.9, SD = 1.2) (p = .008). Specifically, respondents who are deaf were more likely to report hand hygiene (71% vs. 50%; p = .005) and cleaning and disinfecting (37% vs. 18%; p = .006) (Table ​Table44).

Table 4

COVID-19 Prevention Strategies Mentioned by Group

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Strategy	Deaf (N = 104)	Hearing (N = 74)	p Value (χ2)
	n (%)
Stay home	63 (61.2)	50 (67.6)	.382
Social distance	73 (70.9)	45 (60.8)	.161
Wear mask	88 (85.4)	61 (82.4)	.589
Hand hygiene	73 (70.9)	37 (50)	.005
Cleaning/disinfecting	38 (36.9)	13 (17.8)	.006
Wear gloves	12 (11.7)	8 (11)	.887
Cover cough/sneeze	1 (1)	0 (0)	-
Monitor health daily	6 (5.8)	6 (8.2)	.535
Mean (SD)	3.3 (1.1)	2.9 (1.2)	.008a

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Note. COVID-19 = coronavirus disease 2019.

^at-test.

When asked what someone should do when they exhibit symptoms suspected to be related to a COVID-19 infection, participants who are deaf were less likely to say they would stay home and call their provider over seeking health care immediately or doing something else compared with participants who are hearing (47% vs. 57%; p = .003). When controlling for race, age, study site, and health literacy, deaf participants were 60% less likely to report that they would stay home (Table ​Table55). People of color were also less likely to report a plan of staying home and calling a provider, regardless of hearing status.

Table 5

Logistic Regression for a Plan for Staying Home and Calling a Provider (Versus Seeking Immediate Care) in the Event of COVID-19 Symptoms

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Characteristic	Odds Ratio [95% CI]	p Value
Group
Hearing	Reference
Deaf	0.40 [0.19, 0.87]	.020
Newest Vital Sign
Adequate	Reference
At risk	0.45 [0.18, 1.15]	.096
People of color	0.27 [0.11, 0.63]	.003
Age	1.02 [0.99, 1.05]	.061
Site
Site 1 (Rochester, NY)	Reference
Site 2 (Flint, MI)	4.94 [1.98, 12.35]	.003

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Note. CI = confidence interval; COVID-19 = coronavirus disease 2019.

Discussion

Adults who are deaf were 4.6 times more likely to report difficulty accessing COVID-19 information than adults who are hearing. Specifically, the participants who are deaf described COVID-19 information as not being available in their language (36.6%), being scary (76.9%), and hard to understand (26%). More than one-half (61.5%) of ASL signers who are deaf often did not trust COVID-19 information. Despite these challenges, people who are deaf were largely able to identify COVID-19 symptoms and preventive measures.

The COVID-19 pandemic came with an explosion of health information from government-based entities, which are usually viewed as sources of trustworthy and reliable information. Unfortunately, for the deaf community, the information on these platforms were often not accessible in ASL or from a source of trusted agents or entities that have consistently demonstrated caring for the needs of the deaf community and have established a relationship with them (Brogan & Smith, 2009). Further, an ideal trust agent is someone the community can identify with, thus encouraging trust in the source and willingness to change behavior (Kramer et al., 2001). In response to the pandemic and the need for accessible information, medical professionals who are deaf and sign-fluent began to provide information in ASL online and via social media on COVID-19. The Association of Medical Professionals with Hearing Losses (2020) created a COVID-19 Resource List of trusted sources of information, listing other deaf-run organizations providing COVID-19 information in ASL. This was especially important when there was a gap in the provision of ASL interpreters for COVID-19–related public service announcements, requiring lawsuits to bring some entities into compliance (Campbell 2020; Via y Rada, 2020).

The internet provides a large and varied source of health information, which brings the challenge of discerning which information is accurate, a skill already noted to be under-developed in the deaf community (Fajardo et al., 2004; McEwen & Anton-Culver, 1988). This is important because as seen in previous publications and supported by our study, people who are deaf are more likely to learn health information from their peers, including through interactions online, and through web-based sources rather than from their family or health care providers (McKee, Schlehofer et al., 2011; Valentine & Skelton, 2009). Public health officials need to regularly provide ASL access in public service announcements and informational websites; this needs to be supplemented by engaging with trust agents on social media as influencers driving access to reliable information.

As illustrated in previous studies (McKee, Paasche-Orlow et al., 2015), participants in this study who are deaf were more likely to have risk factors for inadequate health literacy than participants who are hearing. Although participants who are deaf did not differ from their peers who are hearing in regard to basic COVID-19 knowledge, they did vary with regard to health care navigation plans, with respondents who are deaf being less likely to stay home over immediately seeking health care in the event of developing COVID-19 symptoms. This is in line with past findings that people who are deaf are almost twice as likely to seek care at an emergency department (McKee, Winters et al., 2015). This might be partially due to emergency departments typically having structures in place to obtain sign language interpreters and due to the fact that it can be difficult for people who are deaf to navigate primary care or urgent care for equitable health services.

Further, people of color, regardless if deaf or hearing, were less likely to plan on staying home over seeking health care immediately for any suspected COVID-19 symptoms. These people shoulder higher burdens of COVID-19 complications than the general population, with higher rates of cases, hospitalizations, and deaths (Abel & McQueen, 2020; Abuelgasim et al., 2020; Dowling & Kelly, 2020; Pareek et al., 2020; Yancy, 2020). Systemic inequities as a result of the COVID-19 pandemic are creating additional challenges to obtaining quality health care for racial/ethnic minority groups and those with limited health literacy (Gray et al., 2020).

When groups who have risk factors for low health literacy are inundated with constantly changing data and messages, it can cause conflicting health-related communication, resulting in people with hearing difficulty to use fewer preventive strategies as a result of a gap in communication (Ipsen et al., 2021). Interestingly, we did not find that with our sample, as the participants who are deaf reported more COVID-19 prevention strategies compared to their peers who are hearing. One possibility for the difference is that our study focused on ASL signers who are deaf and administered the survey in their language of ASL.

Study Limitations

Several important limitations need to be considered. In addition to the potential for respondent bias, responses are self-reported subjective measures of COVID-19–related experiences, knowledge, and information-seeking behaviors. The small sample size limits generalizability and the variables we could control for in our models. However, given our primary outcome of information-seeking behavior, the ubiquity of COVID-19 information, and availability of online sources, we deemed this an acceptable limitation in our analyses. Given the novelty of COVID-19 and the importance of capturing patients' experiences accurately, we examined several distinct but important dependent variables. We did not directly evaluate the accuracy or comprehensiveness of information presented to adults who are deaf and who are hearing. Concordance of messaging across different information sources was not a part of this study; platforms typically not accessible to deaf participants (e.g., radio) were not included as an option in our survey. Further, although participants who are hearing and participants who are deaf were contacted simultaneously, our study is limited by the challenges of quarantine orders caused by COVID-19, making it difficult for the research team to obtain contact information stored on-site for some participants until later in the study period. This contributed to a difference in the timing of some surveys, which is an important consideration for a cross-sectional study on a rapidly evolving COVID-19 experience. Despite these limitations, our study provides insight on how the deaf community has been navigating this pandemic.

Conclusion

People who are deaf reported challenges in obtaining and understanding COVID-19 information. Fortunately, they demonstrated knowledge about COVID-19 symptoms and prevention comparable to their peers who are hearing. In summary, these findings show that efforts in ensuring publicly available health information during COVID-19 have reached and educated the deaf community in terms of risk mitigation and COVID-19 symptom recognition. Additional education on recommended COVID-19 management and guidance on equitable health care navigation strategies are needed for the deaf community and health care providers, respectively. The health care system needs to support patients who are deaf in accessing primary care. Public health officials should ensure that public service announcements are accessible and should also consider reaching out to trust agents in the deaf community to help disseminate health information online in ASL through their social media channels.

References