Moreland, Christopher J. MD, MPH; Latimore, Darin MD; Sen, Ananda PhD; Arato, Nora PhD; Zazove, Philip MD
Editor’s Note: A commentary by M.M. McKee, S. Smith, S. Barnett, and T.A. Pearson appears on page 158.
Deaf and hard-of-hearing (DHoH) people make up the second-largest disability subgroup in the United States, constituting 10% to 20% of the population.1–3 DHoH people experience significant barriers to the job market, including health care professions, due to multiple factors, such as inherent communication barriers and a general misunderstanding of how hearing loss affects communication.
In recent decades, greater numbers of DHoH people have entered health care professions, partly as a result of technological advances, such as electronic stethoscopes, and legal developments, such as the Rehabilitation Act of 19734 and the Americans with Disabilities Act of 1990 (ADA).5 One way in which the ADA enables DHoH individuals to enter the health professions is by mandating that employers and professional schools provide accommodations that can address many of the communication challenges that DHoH people face.5 These accommodations take multiple forms (e.g., captioning, interpreters) and have been of interest to educators and administrators seeking to identify the appropriate provisions of accommodations and how those accommodations affect health care educational institutions.6–8
Although accommodations can minimize barriers that discourage DHoH individuals from entering the health professions, little is known about the effectiveness of these efforts. Even though DHoH health professionals have formed international networking organizations,9 the DHoH physician population is rarely mentioned in the literature.10,11 To our knowledge, no published articles describe the numbers and characteristics of this population or the accommodations they use. Such data are important for multiple reasons. First, knowing this group’s experiences could help organizations provide appropriate accommodations. Second, the lessons learned from DHoH physicians might apply to health professionals with other disabilities. Third, just as minority physicians are more likely than average to serve indigent and minority patients,12–14 our anecdotal experiences with DHoH health professionals suggest that they likewise serve DHoH patients. Thus, providing effective accommodations for DHoH health professionals may help ensure that all patients receive the care they need.
DHoH people in the United States experience significant health care disparities, including less cancer screening, deficient health knowledge, less frequent health care use, and greater physical activity limitation,15–22 as well as higher incidence of depression,23–27 when compared with the general population. The Deaf community, a cultural minority group and a subgroup of the broader DHoH population,28,29 is cited as the limited-English-proficient (LEP) group at greatest risk for poor health communication.30 In contrast to other LEP populations, the DHoH group encompasses a wide spectrum of linguistic fluency and communication styles, ranging from American Sign Language (a language distinct from English) to spoken English to minimal language. Additionally, age of hearing loss onset can affect health-related communication because those with prelingual hearing loss are more likely to experience poor health communication.22 DHoH physicians who have language and hearing concordance with DHoH patients have the potential to improve care for this often underserved population. Anecdotal evidence suggests, for example, that prelingually DHoH physicians are more likely to use signed communication and thus communicate with DHoH patients more effectively. Physicians who develop hearing loss later in life will likely have established English fluency in the context of spoken communication but may also be able to better understand the issues faced by patients with hearing loss.
Our study describes the demographic characteristics of and accommodations used by DHoH physicians and medical students. In addition, we examined whether the quality of their accommodations was associated with career satisfaction. Finally, we investigated whether DHoH physicians and trainees serve or plan to serve DHoH populations in particular.
Survey instrument development
From 2009 to 2010, we developed an electronic questionnaire with up to 89 questions. Respondents with more experience (e.g., practicing physicians) were asked to answer more questions than those with fewer years of training (e.g., medical students). Survey questions fell into five categories: demographics; type and frequency of accommodations used at each training stage; patient population; accommodation and career satisfaction; and personal health. Almost all questions were multiple-choice, although certain demographic questions invited open-ended responses (e.g., age, location). Most questions were novel, developed by iterative revisions after review by survey experts and a focus group. Previously validated questions included a health self-perception question from the National Health Interview Survey (NHIS) and depression questions from the first two Patient Health Questionnaire questions (PHQ-2). For the NHIS multiple-choice question, respondents identify their health as excellent, very good, good, fair, or poor.31 The PHQ-2 multiple-choice questions ask about how often one has experienced anhedonia or depressed mood in the past two weeks; the four responses for each are scored from 0 (“not at all”) to 3 (“nearly every day”). A score of 3 or more has 83% sensitivity and 92% specificity for major depression.32
The survey consultants, who were academic professionals with training in survey methodology or experience conducting surveys, reviewed multiple iterations of the survey. Five DHoH veterinarians and veterinary students made up the focus group. Because veterinary schools are similar to medical schools in structure and content, we believed that veterinarians would provide a reasonable focus group for refining the questionnaire while allowing us to preserve the small target population of DHoH physicians for potential participation in the actual survey. The focus group provided feedback on question structure, phrasing, and content.
The study protocol was reviewed and approved by the institutional review boards of the University of California, Davis and the University of Michigan.
Recruitment of participants
Recruitment posed a challenge because no broad database of DHoH health professionals currently exists. Using snowball sampling, we used four sources to contact potential participants by e-mail: physicians or medical trainees in the Association of Medical Professionals with Hearing Losses9 subscribership database; members of the Association of American Medical Colleges’ (AAMC’s) Student Affairs listserv; disability services representatives as identified via the Web sites of MD-granting and DO-granting medical schools; and all DHoH physician or trainee colleagues known to us. Snowball sampling is a methodology useful for accessing hidden populations or, as in our study, contacting a population for which no available sampling frame exists. Known population members are asked to assist investigators by identifying contacts within the same population, who are then asked to do the same in turn.33 In the recruitment e-mails, we explained the nature of the study and its goals and provided our contact information, inviting the recipient to participate and/or forward the e-mail to anyone who would qualify according to the inclusion criteria. The study’s inclusion criteria required that participants be (1) DHoH, (2) medical students, residents, fellows, or physicians who had completed training, and (3) currently in training or practice within the United States or associated territories. We offered no incentive for survey completion.
Using this multipronged approach, we identified 86 potential participants who consented by responding via e-mail. The Web-based survey was available to these individuals from July through September 2010. Individuals who consented to participate by contacting investigators received an e-mail including a link to the survey, and nonresponding participants received two subsequent reminder e-mails at four-week intervals. After survey completion, we removed identifying information from the data, which were safeguarded on a password-protected computer in a locked office.
Because only one fellow completed the survey, we conflated this participant into the resident group, then divided respondents into two groups: trainees (medical students and residents) and practicing physicians. After calculating absolute values and percentages for demographic information, we sought univariate correlations between demographics and four variables (accommodation satisfaction, sense of institutional support of accommodations, career satisfaction, and likelihood of recommending medicine as a career) with Spearman rank correlation (using a significance cutoff of 5%). We dichotomized satisfaction variables by combining “strongly agree” and “agree” responses into one group and the other responses (“neutral,” “disagree,” and “strongly disagree”) into another. Association between these dichotomized variables and demographic factors (e.g., gender, marital status, ethnicity, having a DHoH family member) were explored using Fisher exact test. We conducted analyses using SPSS Statistics 19 (IBM Corp, Armonk, New York).
Of the 86 potential participants, 56 people (65%) participated in the survey: 25 practicing physicians, 8 residents, 1 fellow, and 22 medical students. Ages ranged from 22 to 73 years (mean 36.6; median 32.5). Table 1 outlines the demographics, stratified by expertise level (medical students, residents, or practicing physicians). The distribution of males and females was almost equal in the medical student and practicing physician participant groups, whereas 6 residents were men and the remaining 2 residents did not identify gender. Forty-one (73%) of the subjects were Caucasian; this percentage increased with stage of training.
Forty-one respondents (73%) identified their hearing loss as severe (n = 17) or profound (n = 24); all but 1 had bilateral hearing loss, with most etiologies unknown. Self-identification of hearing level varied widely: 18 chose more than one category. Relatively few respondents had a DHoH family member. All respondents were comfortable or very comfortable with English (n = 52; 4 nonresponders), whereas 17 (30%) were comfortable or very comfortable using signed communication. Although most participants reported age of onset of hearing loss at or before 1 year of age, 8 reported losing hearing at or after age 18 (range 18–48, mean 33.5, median 35.5).
Because telephone use is prevalent in medicine but frequently poses a barrier to communication for DHoH people, we asked participants about telephone use preferences. For analysis, we distinguished telephone use from other hearing-related services because many telephone-related services are not provided as accommodations by educators or employers but are, instead, available to the public for general use. Among 25 practicing physicians, 14 (56%) preferred volume-amplified phones, 2 (8%) used unadjusted telephones, 5 (20%) used a video relay system (VRS), 4 (16%) used voice carry-over (VCO), and 3 (12%) preferred not to use the telephone. Among 31 trainees, 15 (48%) used amplified telephones, 12 (39%) used unadjusted telephones, 2 (6%) used VRS, 4 (13%) used VCO, and 6 (19%) preferred not to use the telephone. (List 1 describes VRS and VCO in detail.)
Current or planned medical specialties
As shown in Table 1, 17 of 25 practicing physicians (68%) practice in a primary care specialty or subspecialty (internal medicine, pediatrics, or family/community medicine). Only 1 reported no clinical patient contact. Seven of 31 (23%) trainees planned to enter a primary care field, 12 (39%) were undecided, and 4 (13%) planned to specialize in otolaryngology.
Thirty individuals initially consented to participate in the study but did not complete a questionnaire. To obtain further insight into the career preferences of DHoH physicians, we searched for their names via Google and the American Medical Association (AMA) DoctorFinder,34 identifying 10 in a primary care specialty and 5 in a non-primary-care specialty. One reported no current clinical patient contact. We were not able to identify a specialty for the remaining 14 because of multiple people with the same name, lack of information about anyone with that name, or incomplete name information available to us.
Accommodations at the current stage of training and practice
Table 2 indicates reported professional accommodations by current level of training. List 1 describes each accommodation. Reported accommodation use varied widely. Simple amplified stethoscopes and other modified stethoscopes (e.g., connection to hearing aids or visual output) were the most frequent accommodation (n = 50; 89%). Eighteen participants also reported using auditory equipment (32%), 13 used note-taking (23%), 12 used computer-assisted real-time captioning (CART) (21%), 13 used signed interpretation (23%), and 8 used oral interpretation (14%) services. Although our survey asked about the use of modified surgical masks (e.g., with transparent windows or face shields), no one reported using these as current accommodations (Tables 3 and 4, however, demonstrate that respondents reported using modified surgical masks in some specific contexts). Additional accommodations that participants noted in the “other” category included telephone adjustments (e.g., a staff member conducting telephone calls for a physician). Most respondents used more than one accommodation; only 15 reported using a single accommodation, which was an amplified/modified stethoscope for all but 1 respondent. Four people, all trainees, reported using both CART and interpretation. Three respondents reported no current use of any accommodations. Of these 3 respondents, 1 reported a profound hearing loss, another was uncertain of the level of hearing loss but noted that it was bilateral, and the remaining participant reported a moderate hearing loss.
In addition to reporting what types of accommodation they used, respondents provided information about how frequently they used accommodations (daily, most days, some days, rarely, or never) and in what situations (because some accommodations may only be helpful in specific situations). Over 50% of respondents reported using nearly every specified accommodation (with the exception of modified surgical masks) daily or most days (see Table 2). Table 3 demonstrates that, for situation-specific use, CART and note-taking services were used almost exclusively in lectures and small-group discussions, and modified/amplified stethoscopes were used in direct patient care. Interpreters and auditory equipment were used less frequently but in a wider variety of situations.
Although institutions and employers provide accommodations, users invest personal time in arranging them. For example, individuals may spend time submitting requests for accommodations, reviewing lecture terminology with captionists, or organizing daily schedules with interpreters. Our respondents estimated time investments ranging from 0 to 10 hours per week (mean 1.3, median 1.0). Regarding their current situation, 16 respondents reported no time invested, 18 reported 1 hour weekly, and 11 (20%) reported >2 hours weekly devoted to accommodation arrangements. Among medical students, the mean and median time spent were, respectively, 1.9 hours (standard deviation [SD] 2.8) and 1.0 hours (interquartile range [IQR] 1.0), with 2 individuals reporting 10 hours spent weekly. Among residents, the mean and median were 1.0 hours (SD 2.2) and 0.83 hours (IQR 3.0). Among practicing physicians, the mean and median were 0.9 hours (SD 1.3) and 1.0 hours (IQR 1.0).
Use of accommodations over time
We asked the 9 residents and 25 practicing physicians about accommodations at each stage of training and practice, including each respondent’s past and current stages; all responded (see Table 4). (Medical students were not included because their training, for our purposes, was only one stage of training and would not contribute to our examination of accommodation use over time.) Only 1 physician reported using no accommodations, whereas all residents reported using more than one accommodation. Eight physicians (32%) and 2 residents (22%) reported amplified or modified stethoscopes as their only accommodation. Respondents reported using oral interpretation and signed language interpretation with equal frequency in medical school.
Satisfaction with accommodations
Respondents seem generally satisfied with accommodations. When asked how well current accommodations satisfy their needs, 16 of the 25 physicians (64%) and 21 of the 31 trainees (68%) answered “very well” or “well,” 3 physicians (12%) and 7 trainees (23%) answered “neutral,” and only 3 physicians and 1 trainee answered “not well” or “not well at all.”
Current or planned work with DHoH patients
Practicing physicians reported caring for DHoH patients 10% of their time on average, though responses ranged from 0% to 60% (mean 9.3, median 2.0).
Because trainees have less control over their current patient populations, we asked what percentage of their time they expected to devote to DHoH patients in the future. Eighteen of the 31 trainees (58%) were uncertain. Three (10%) expected that none of their patients would be DHoH, whereas 1 trainee each anticipated that 2%, 15%, 20%, 40%, and 50% of future patients would be DHoH. One expected to care for “more than average” DHoH patients.
In response to the statement “I am overall satisfied with medicine as a career,” 46 (82%) of respondents agreed or strongly agreed, 3 were neutral, 2 disagreed, and 0 strongly disagreed. Regarding the statement “I would recommend medicine to a DHoH student when asked for advice,” 20 (36%) agreed or strongly agreed, 19 were neutral, 3 disagreed, and 0 strongly disagreed.
General and psychiatric health
Only 1 trainee and 1 physician scored more than 2 on the PHQ-2; the trainee commented that the response was due to difficulty obtaining accommodations. As for self-perception of health, no respondent selected “poor.” Three out of 31 trainees (10%) and 5 of 25 physicians (20%) reported a “fair” or “good” self-perception of health, whereas 26 trainees (84%) and 10 physicians (40%) selected “very good” or “excellent.”
Correlation of demographic variables with accommodation and career satisfaction
We explored associations between three variables (accommodation satisfaction, career satisfaction, likelihood of recommending medicine as a career) and several demographic and health-related factors.
For practicing physicians, accommodation satisfaction was positively correlated with age (Spearman correlation coefficient [ρ] = 0.42, P = .05), years since hearing loss (ρ = 0.5, P = .02), comfort with sign language (ρ = 0.44, P = .03), and a positive sense of institutional support (Spearman = 0.61, P = .003). Career satisfaction was positively correlated with years since hearing loss (ρ = 0.44, P = .04), perceived health status (ρ = 0.5, P = .03), and a positive sense of institutional support (ρ = 0.8, P < .001). The likelihood of recommending a career in medicine was also positively correlated with a positive sense of institutional support (ρ = 0.45, P = .04). Further, accommodation satisfaction was correlated with both career satisfaction (ρ = 0.53, P = .009) and likelihood of recommending a career in medicine (ρ = 0.45, P = .03).
In contrast with the data for practicing physicians, we found few significant associations for trainees (medical students and residents). Accommodation satisfaction was positively correlated with perceived health status (ρ = 0.46, P = .01). A positive sense of institutional support was only borderline correlated with career satisfaction (ρ = 0.37, P = .06). Trainees’ intention to serve the DHoH population was positively correlated with increasing comfort with sign language (ρ = 0.5, P = .005).
To our knowledge, our study is the first to explore the health care workforce of physicians and trainees with hearing losses. Although respondents were predominantly Caucasian and comfortable with English, the participant group was heterogeneous with regard to hearing level, self-identification of hearing status, and etiology of hearing loss, as well as age, telephone use, and comfort with signed communication. Participants’ overall general and psychiatric health seemed reassuringly robust (a contrast to the general DHoH population),15–27 though our limited number of respondents precludes definite conclusions or broad generalizations because we have no information about the perceived health of nonresponders.
Respondents’ communication preferences and reported use of accommodations both varied widely. Modified or amplified stethoscopes were the most common accommodation, but most respondents used a combination of accommodations and did so frequently. Thus, medical educational institutions and employers need to consider multipronged accommodations on an ongoing basis for DHoH people. Of concern, some trainees seem to devote significant personal time to arranging accommodations. Because the ADA mandates individual-centered accommodations, institutional policies should allow adjustment of reasonable accommodations to the individual’s needs at each stage while minimizing demands on trainees’ limited free time. Our results suggest that appropriate institutional support, when matched to a DHoH person’s needs, contributes to career satisfaction among DHoH physicians and their support of medicine as a career.
The U.S. primary care workforce, if current trends continue, will soon be insufficient to meet the needs of the population, including underserved minorities.35 Consistent with previous findings,36 our results demonstrate that DHoH physicians and trainees seem likely to serve DHoH patients and to enter primary care, suggesting that they make important contributions to the primary care workforce caring for often-underserved DHoH populations. Because physicians’ language concordance with DHoH patients (e.g., use of American Sign Language with signing patients) is associated with higher appropriate use of preventive care services,37 DHoH health professionals’ ability to provide such service should affect care at the individual and population levels. Sign language concordance with DHoH patients would be more likely from physicians who developed hearing loss early in life and are thus more likely to use signed communication, an important consideration for those targeting services to the DHoH signing population.
Along with the potential benefits they provide for patients, DHoH trainees and physicians may also influence their colleagues’ perspectives. Previous literature has discussed the need to enhance physician training in providing care to patients with disabilities,38,39 including DHoH people,40 and some programs have incorporated patients with disabilities into standardized patient training systems.41 Anecdotal evidence suggests that health care professionals with disabilities can help bridge colleagues’ understanding of the differing perspectives of the DHoH and health care communities, such as the concept of deafness as a cultural aspect and a medical condition.
The recruitment and retention of DHoH trainees and faculty at medical schools has several implications for patient care and diversity awareness. First, because accommodation use and preference vary broadly, each institution will need to work closely with DHoH individuals to determine optimal accommodations. Second, the optimization of such accommodations may in turn contribute to greater career satisfaction and subsequent recruitment of DHoH community members into health care. Third, such recruiting and retention may augment efforts by programs seeking to provide more culturally accessible and psychologically compatible care for the DHoH population. List 2 identifies some resources available to medical educators with interest in these topics.
Our study has a number of strengths. Despite the lack of an identifiable sampling frame, our recruitment efforts were multipronged and national, incorporating MD-granting and DO-granting medical school networks, a nonprofit organization, and professional networks, although we received relatively few direct responses from the medical school networks. We tested novel survey questions with a focus group that was reasonably parallel with the intended study population. We developed respondent-centered questions by using previously validated questions where possible, and we achieved an excellent response rate. Within 24 hours of survey initiation, over 20% response was achieved, with over 40% response within the first two weeks—both potential indicators of respondents’ strong interest in the topic. The overall response rate was likely boosted by our three survey e-mails as well as several e-mails preceding survey initiation that alerted potential respondents to the precise date of survey release.
Several limitations also exist, particularly our inability to reliably generalize our results to all DHoH physicians. To our knowledge, no database tracks physicians by legal disability; thus, there exists no reliable estimate of the total number of DHoH physicians from which we could develop a sampling frame. Moreover, our results are likely less generalizable to physicians with hearing loss acquired later in life; in other words, most of our respondents described hearing loss early in life, which may affect communication preferences. Our recruiting efforts via medical school Web sites resulted in only a few direct responses; thus, we strongly suspect that our results undercount the true number of DHoH medical students in the United States. The number of resident respondents was low and likely underrepresented the true population of DHoH residents, in part because of the difficulty we had in reaching residency programs. Similarly, our Web-based sampling most likely failed to reach some DHoH physicians, and the sampling methodology clearly raises the possibility of bias introduced by recruiting individuals known to us. In addition, no reasonable control group was available because hearing physicians and trainees generally do not request accommodations under the ADA. Nor can our results describe the quality or appropriateness of respondents’ accommodations. Finally, the inclusion of two authors (C.M. and P.Z.) as respondents could theoretically bias the results; however, we made up less than 4% of the respondent population, and no difference was noted among the univariate analyses when our responses were excluded.
We suggest several avenues for further development. Databases of trainees and physicians, such as those maintained by the AAMC and the AMA, should collect voluntary demographic information on legal disabilities and fluency in American Sign Language (as is done with spoken languages). Recruitment and retention efforts by organizations to increase diversity should include DHoH physicians. Such efforts would benefit hearing clinicians as well as increase the availability of hearing- and language-concordant care to underserved DHoH patients. Tracking demographic data from DHoH individuals in other health professions, such as nursing, would help support the concept of team-based care for this underserved population. Additionally, qualitative studies would deepen our understanding of the factors contributing to DHoH health professionals’ decisions to enter primary care specialties.
In summary, DHoH physicians and trainees seem satisfied with frequent, multimodal accommodations from employers and educators, despite some users’ notable time investment in organizing these accommodations. Accommodation satisfaction was associated with both career and institutional satisfaction as well as care provision for DHoH people. Our results may assist organizations in planning accommodation provisions. Because DHoH physicians and trainees seem to choose primary care specialties and serve DHoH patients, recruiting DHoH providers should help meet the needs of this underserved population.
Acknowledgments: The authors appreciate feedback and suggestions about the survey from Julie Rainwater, PhD, of the University of California, Davis Center for Translational Science and Research, and from Thomas Schwenk, MD, then in the Family Medicine Department at the University of Michigan School of Medicine and now dean of the University of Nevada School of Medicine.
Funding/Support: During survey development, Dr. Moreland’s fellowship position was funded by Health Resources and Services Administration grant QD55HP10337-02-00; this sponsor had no role in the study design, data management, or manuscript review.
Other disclosures: None.
Ethical approval: Ethical approval was granted by the IRBs at the University of California, Davis and the University of Michigan at Ann Arbor for this study.
Previous presentations: Preliminary data were presented at the Association of American Medical Colleges Group on Diversity and Inclusion Conference, New Orleans, Louisiana, March 2011, and at the Association of Medical Professionals with Hearing Losses Conference, Portland, Oregon, August 2011.
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