Introduction
Inequities in health and health care have increasingly become an area for concern
and action for public health professionals, clinicians, policy makers, and communities.
Research has documented inequities in the prevalence of chronic diseases of subpopulations
defined by education, income, race and ethnicity, and English proficiency. Justice,
a cornerstone of medical ethics, calls for corrective actions (1).
We contend that all communities contain a minority group whose health needs are understudied
and underserved. This group is the sign language–using deaf population. Most sign
language users have been deaf since birth or early childhood (2-7). Sign language
is not global nor is it based on a local spoken language. For example, British Sign
Language (BSL) and American Sign Language (ASL) are distinct languages with little
in common with the English language or each other. In the United States, an estimated
100,000 to 1 million people use ASL as their primary language. We describe 4 issues
that underlie health inequities experienced by deaf sign language users and propose
6 public health approaches to address these health and health care inequities to promote
health and prevent chronic diseases.
Four Issues That Underlie Health Inequities Experienced by Deaf Sign Language Users
Data on the health of deaf persons are lacking. In Healthy People 2010, the absence
of health indicator data on groups with disabilities is recurrently cited (8). In
the United States, telephone surveys exclude deaf persons, and questionnaires distributed
by mail often use written English, a second language for many deaf ASL users (9).
Written English surveys may also be inadequate because many people deaf since birth
or during childhood have low English literacy (10). The sparse health data that do
exist show that adults who have been deaf since birth or early childhood report poorer
health than adults in the general US population (11). The lack of the most rudimentary
health statistics from deaf populations thwarts efforts to engage deaf communities
in setting priorities for health improvement and chronic disease prevention programs.
Many adults deaf since birth or early childhood have low health literacy. This
low health literacy results from a lifetime of limited access to information that
is often considered common knowledge among hearing persons (12). For example, many
adults deaf since birth or early childhood do not know their own family medical history,
having never overheard their hearing parents discussing this with their doctor (13).
Family history is a risk factor for some chronic diseases, including diabetes and
heart disease. In the United States, deaf adult sign language users' knowledge of
English medical terminology is similar to that of non-English–speaking immigrants
to the United States (14). Insufficient knowledge of health-related vocabulary is
not limited to deaf adult sign language users with low educational attainment (5).
The effect of low health literacy is profound in other minority populations, affecting
health care–seeking behaviors, interactions with clinicians, adherence with medical
advice, and health outcomes for chronic diseases (15).
Barriers limit health care with deaf sign language users. In the United States,
adults who have been deaf since birth or early childhood are less likely to have seen
a physician than adults in the general population (11). Deaf sign language users are
often dissatisfied with physician–patient communication (3,4) and report better access
to emergency departments than to primary care (4). Physicians report that deaf patients
require more time and effort than hearing patients (16) and that interpreter services
are often not available or reimbursed (17). One study showed that deaf ASL users who
attended a primary care practice with full-time interpreter services were more likely
to report receiving preventive services than a comparison group of deaf ASL users
who sought care elsewhere (2). Health care quality indicators do not currently specify
deafness or sign language, so the full effect of health care barriers on the health
of deaf sign language users and their families is unknown. However, it appears that
addressing language barriers improves adherence with some preventive services and
may help prevent chronic diseases or improve patients' long-term outcomes through
earlier detection.
Deaf persons may have a biologic basis for some health differences. In utero or
early childhood illnesses (eg, congenital rubella syndrome) that cause deafness may
have non-otic sequelae. Heredity likely explains most deafness since birth or early
childhood for those born in the United States after the rubella pandemic of the early
1960s. Several genetic conditions involve other organ systems, such as Jervell and
Lange-Nielsen syndrome (deafness, a long Q-T interval, and predisposition to arrhythmias
and sudden cardiac death) and Usher syndrome (congenital hearing loss and later-onset
vision impairment due to retinitis pigmentosa) (Table 1). On the basis of findings
from mouse models, emerging research with humans is examining the association of Pendred
syndrome (early hearing loss and later-onset euthyroid goiter) with the risk for hypertension
and asthma (21). Non-otic effects of other deafness-related genes have not been extensively
studied. Although biology explains some health differences experienced by deaf people,
their condition-related health outcomes are likely to be worse than those of hearing
people with the same condition because of inequities in access to health care, health
information, education, and economic resources.
Six Recommendations for Public Health
Public health entities must work together with deaf sign language users to address
inequities in health information access. At a minimum, captions or transcripts should
be the standard for all publicly available health information that includes audio
content. This includes health information videos that target young children so that
deaf parents can make informed decisions about the health information content for
their hearing children. Captions should be available in English and Spanish, since
some Latino ASL users in the United States use Spanish as their second language. Furthermore,
efforts should be made to translate health information into ASL and adapt the presentation
of that information so that it is culturally appropriate (22). Communities, states,
and countries should ensure that their public health emergency communication plans
reach deaf people and their families and that emergency workers can access sign language
interpreter services. Involving deaf people in the planning and development processes
will likely result in better outcomes. Accessible and culturally appropriate health
information can help deaf sign language users to make decisions about health and health
care behaviors associated with chronic disease risks.
Include deaf people in surveillance and health research. Options are required
for data collection in the respondent's primary language (ie, ASL for ASL users) as
is exploration of ways to include populations excluded by certain survey modalities
(eg, telephone surveys). Recruitment strategies need to be adapted because adults
who have been deaf since birth or early childhood have little experience with public
health research. Recruitment should also be tailored to overcome deaf persons' mistrust
of public health professionals that may result from prior negative health care experiences
(4). Consent processes should be studied to ensure that researchers and participants
have a shared understanding of concepts such as confidentiality, randomization, blinding,
and placebo use. Collaborative work to develop accessible survey methods is under
way and should continue to include deaf sign language users as partners. Accurate
data on health and risks will empower deaf communities to work with public health
professionals to establish health priorities, create programs related to those priorities,
and evaluate the effectiveness of those programs in preventing chronic diseases.
Collect new data, and analyze existing data, in ways that allow us to learn about
actual deaf populations. For health data to be useful, surveys should collect deaf-related
demographic information (Table 2), such as age at onset of deafness. Adults who have
been deaf since before age 3 have different patterns of health care services use (11)
and health behaviors (24) than adults who became deaf later in life. This makes sense
— a 60-year-old man who has been deaf since birth and a 60-year-old man who has been
deaf since age 59 will have different life experiences, including education and employment
opportunities and access to health information and health care. It would be surprising
if those 2 deaf men had similar health and health care practices. We lose valuable
public health information when we conduct analyses that group together all deaf people
or all people who are deaf or hard-of-hearing. Reports on analyses of data without
deaf-related demographics should acknowledge these limitations. Medical record and
billing data currently are limited in their ability to identify people who are deaf
(25,26). Establishing standard domains for deaf-related data would allow for meaningful
chronic disease surveillance, research, and program evaluation. Data analyses and
interpretation of findings should include input from deaf people to enhance relevance
and accuracy.
Encourage deaf sign language users to participate in public health. Community-based
participatory research (CBPR) focused on health, and not specifically hearing, is
an example. Deaf sign language users can add content to public health curricula and
teach public health students about the deaf community, CBPR, and other topics, including
cross-language and cross-cultural issues. To encourage collaboration, public health
conferences should facilitate the participation of deaf sign language users. For all
conference attendees to benefit from the participation of deaf sign language users,
conferences must have interpreter services for presentations, including poster sessions,
other formal and informal meetings, and professional networking between conference
sessions and in the exhibit halls. Videos shown at conferences and on the Internet
must have captions for the audio content.
Encourage deaf sign language users to pursue careers in public health, health
research, and health care. Deaf sign language users should be encouraged to pursue
careers in public health and other health-related fields, as are members of other
underserved minority communities. For this effort to be successful, deaf students
in health professional programs must have access to the "informal curriculum," aspects
of mentoring and professional development that hearing students learn outside of the
formal curriculum. These opportunities occur during conversations that take place
after meetings and lectures formally end and during impromptu communication with faculty
and other students. Public health and other health professional training programs
can collaborate with deaf and hearing faculty from other professions to learn from
their experiences mentoring deaf learners. Pipeline programs for health careers should
expand to reach out to deaf youth. Increasing the number of public health professionals
and researchers who are deaf sign language users should enhance collaboration between
public health and deaf communities, including dissemination of health information,
development of appropriate and accessible programs, and participation in chronic disease
research and surveillance. There will be other benefits to increasing the diversity
of our public health students, workforce, and faculty. Recruiting from a new demographic
may help address the projected shortage of public health professionals (27), as well
as facilitate for this underemployed population (28) access to health-related employment
(a large and growing segment of the US economy that consists of more than 16 million
jobs, representing more than 11% of employed people) (29).
Advocate for funding to support communication access costs for public health programs
and research. Interpreter services are essential for communication between deaf sign
language users and those who are not fluent in sign language. If interpreter services
costs are required to come from core program budgets, accessible programs will have
fewer resources for their public health initiatives and research. This "penalty" discourages
accessibility and creates another disparity. Some mechanisms exist, such as the US
Department of Health and Human Services' research supplements to promote diversity
in health-related research (PA-08-190). These funding mechanisms are essential to
ensure that our chronic disease and other public health–related programs are accessible.
To prepare for the increase in demand for sign language interpreter services in these
settings, we should start now to advocate for funding to increase the nation's capacity
for sign language interpreter services, including advanced training to prepare interpreters
for public health–related vocabulary and settings.
Other Populations
In this article we focus on public health with deaf sign language users. Many deaf
and hard-of-hearing people do not know sign language, and they comprise populations
that also experience inequities in access to health communication, health care, health
research, and health-related careers. Some of our recommendations also apply to other
deaf and hard-of-hearing populations, but communication needs are diverse and public
health collaboration with these populations will yield additional recommendations
to address inequities. We do not attempt to address all of these issues here.
Conclusion
It has been 20 years since the passage of the Americans with Disabilities Act of 1990,
yet deaf sign language users continue to experience inequities accessing health care,
health information, health research, and health-related careers, which limits their
ability to achieve optimal health for themselves, their families, and their communities.
The full effect of these inequities on chronic disease continues to be mostly unmeasured.
Bringing about the conditions necessary for people to be healthy is a requirement
of social justice (30), as is collecting the data necessary to make that happen (1).
Public health has an opportunity to address these inequities and to lead by example
by promoting access and collaboration. In this instance, health promotion and chronic
disease prevention require social justice, achieved through respectful collaborations
to ensure accessible and culturally appropriate communication (31,32), sometimes facilitated
with captions and interpreter services.