Introduction

Of the 8.8 million North Americans who are deaf [1], nearly a million belong to the Deaf community [2]. The Deaf community is distinguished by its preference for using American Sign Language (ASL) and its distinct culture.

There are many studies showing that members of the Deaf community experience health disparities due to language barriers, which contribute to lower health literacy [1, 3]. The problem is exacerbated by the fact that most physicians are not adequately prepared to provide linguistically and culturally competent care for deaf patients [4]. Many lack knowledge about deaf culture and deaf patients’ rights [5–7]. Healthcare providers report discomfort with deaf patients, limited understanding of deaf culture, and a belief that deaf patients do not trust them [8–10].

Many physicians do not realize how few words can be lip-read (30%) [2, 8, 10, 11]. Failure to communicate effectively can lead to mistakes and this contributes to deaf patients’ preference to avoid physicians [8, 10, 12] and an increasing number of lawsuits [1]. While many physicians believe interpreters should be used when interacting with a deaf patient, few actually schedule them [2, 11, 13], while others are unaware of their legal obligation to provide interpreters [6]. Compounding the problem, many deaf people themselves do not understand their rights to interpreting services [2].

Further contributing to the distrust of physicians has been the medical community’s view of deafness solely as a pathophysiological disease that needs to be “cured,” rather than a unique culture and language that warrants respect [2, 14]. Other deaf patients perceive that physicians act in a paternalistic manner that effectively reduces their autonomy [1, 2] and associate their healthcare experiences with stress and strong negative emotions [2, 15].

Since many healthcare barriers stem from health care providers’ lack of community-specific cultural and linguistic competency when working with members of underserved groups, training providers to be culturally and linguistically competent should help reduce those barriers [16–18]. For example, when physicians can sign, deaf patients report that they were more likely to follow recommended health maintenance behaviors, visit their physicians regularly [5], and feel greater satisfaction with the clinical experience [2].

Given the lack of training in deaf culture and the limited number of providers who sign, the University of California, San Diego (UCSD) School of Medicine created the NCI-funded fellowship program, Medical Students, Cancer Control, and the Deaf Community Training program (DCT). The fellowship was created to train a small cohort of its medical students in ASL and deaf culture within the context of a cancer control curriculum. The goal was to have them ultimately become the medical partners of Deaf community leaders who were advocating for improved access to health information and care.

Methods

Hypothesis

The DCT medical students will demonstrate greater knowledge of deaf culture and deaf patients than UCSD’s non-DCT medical students and faculty.

Intervention

As the first part of this 2-year training program, fellows participated in a deaf culture training program. They were asked to master a curriculum of self-paced reading materials that would provide a sound understanding of deaf culture. Over the first 2 years of school, they completed six quarters of ASL classes and one summer at Gallaudet University’s residential ASL/deaf culture immersion program. Throughout this time, the previously mastered cultural concepts were reinforced. While in school, students practiced their ASL and cultural competency by interacting with the community and by providing the Deaf community with workshops about health promotion. Students complete their mandatory research projects on a topic related to the Deaf community and take fourth year rotations where they interact with the Deaf community [19]. Fellows received an $8,000/year stipend as compensation for the extra burden the program’s placed on the fellows during their medical studies and as a mode of retention.

Study Design

DCT students, non-DCT students, and faculty were invited to take part in an institutional review board (IRB)-approved, anonymous survey with six multiple choice and 28 true-false questions plus an “I don’t know” option. To maintain participant anonymity, IRB had approved an implied consenting process, which placed the consent statement at the top of the survey page and considered return of the survey as sufficient evidence of implied consent. To keep the survey brief, the only socio-demographic data gathered was whether they were faculty, DCT, or non-DCT.

The survey questions were created based on a review of the literature [2, 5–11, 13], the project team members’ prior knowledge, and guidance from the project’s Deaf community advisory group. Questions were related to: (1) commonly held misperceptions of deafness and deaf culture, (2) common difficulties experienced by deaf patients in the clinical settings, (3) errors commonly made when providers work interpreters in the clinical setting, and (4) the participants’ prior exposure to the Deaf community. The survey also asked respondents to list up to five problems they thought deaf patients may face when hospitalized (Table 1). The survey was extensively pilot tested prior to dissemination.

Table 1 DCT medical students, faculty and non-DCT medical students group comparisons on knowledge multiple choice items
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Recruitment of Participants

From April 2007 to May 2008, 780 medical school faculty and 640 non-DCT students and 25 DCT students from the graduating classes of 2007-2011 were sent the survey via list-serve and Survey Monkey [20], making anonymous responses possible. Although participants were reached in various ways, they were instructed to complete and return only one survey. While it was not possible to separate the medical school faculty with MD degrees (N = 525) from those with other terminal degrees, the survey instruction declared that the survey was directed only to faculty with direct patient care responsibilities.

Data Analysis

All data were entered and analyzed using SPSS version 14.0 [21]. Responses were summed to create an overall, continuous sum score, where greater scores indicated more knowledge. A binary coding system (1 = correct, 0 = incorrect) was used for all items. The Knowledge sum score was analyzed using analysis of variance and t tests [22, 23]. Chi-square tests were used to compare responses to individual items among the three study groups. A significant difference is described as a p value greater than 0.05.

Description of the Sample

Of the 372 surveys returned, nine were omitted because respondents reported that they were non-clinical faculty, not medical students, or did not self-identify. Participation was 25% (n = 130/525) for faculty, 33% (n = 211/640) for non-DCT medical students, and 88% (n = 22/25) for DCT students.

Results

The hypothesis was supported. The DCT students had a significantly higher overall knowledge score (M = 26.9) than the faculty (M = 17.07) and the non-DCT students (M = 13.79; p ≤ 0.01; Table 1). For example, DCT students were significantly more likely to know that most deaf children are born to hearing parents, deaf patients seldom use support groups, and the different modes of communications and difficulties associated with each mode. Table 1 shows the cumulative scores as well as the scores for each of the three groups broken down by individual questions.

We anticipated that for the faculty, DCT, and non-DCT students, having prior exposure to the Deaf community would predict higher cultural knowledge scores. The linear regression analysis showed that this prediction held true only for the faculty (B = 3.839, SE = 1.751, p < 0.05). However, faculty with prior experience still scored far below the DCT students, but significantly higher (M = 17.51) than non-DCT students with prior exposure (M = 13.92; Table 2).

Table 2 Comparison of faculty and non-DCT medical student
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Further analyses were conducted to compare the total knowledge scores between faculty and non-DCT students based on whether they reported having a deaf or hard-of-hearing person in their immediate social circle. For those who reported not having a deaf or hard-of-hearing person in their social circle, faculty had significantly higher average knowledge scores (M = 17.73) than the non-DCT students (M = 13.66). There was no difference in knowledge scores between faculty and non-DCT students who reported having a deaf or hard-of-hearing person in their social circle (Table 2).

Among those who reported awareness of deaf culture, the faculty (M = 18.09) had greater knowledge scores than the non-DCT students (M = 14.23). All faculty (who did, M = 17.82; and did not, M = 13.44 report wanting to take an ASL class in the past) had higher knowledge scores compared to non-DCT students in the corresponding categories (M = 16.70, M = 14.28, respectively). Faculty who reported never taking an ASL class had significantly higher knowledge scores (M = 17.01) than non-DCT students in the same category (Table 2).

Participants were asked to list up to five problems they felt a deaf person would have when hospitalized, other than the obvious difficulties of communicating with their healthcare provider or the inability to use the room’s telephone. Responses to this open-ended question were qualitatively analyzed. Those responses that were too ambiguous or not specific to difficulties experienced by deaf patients were omitted from analysis. Response were clustered by the primary author and two independent researchers (85% inter-rater agreement) [24, 25], culminating into 15 themes. For those responses in which there was a disagreement, a consensus among the three researchers was reached. Results from this qualitative thematic analysis [25] are outlined in Table 3.

Table 3 Cumulative ranking of most frequently listed perceived problems that hospitalized deaf patients may encounter in a hospital setting
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The frequency with which the three groups endorsed each theme is reported in Table 3. Each group endorsed the 15 difficulties in unique ways. DCT students listed “understanding terms and medical language” as the number one difficulty experienced by deaf patients when hospitalized, while faculty and non-DCT students listed “communication with persons other than healthcare providers, (i.e., janitor or dietician).” The DCT students also were more likely to list maltreatment or mistreatment as a difficulty.

Discussion

Literature has shown that the Deaf community experiences barriers to the acquisition of health information and care [1, 2, 4, 5, 8, 9, 11, 14, 16, 26–28], which may be improved by increasing clinicians’ cultural competency [8–10, 12, 14, 15, 17, 19, 29, 30]. The DCT program was designed to address this issue. The data presented in this paper demonstrate that the DCT students scored significantly higher than faculty and non-DCT students on knowledge related to cultural competency within the Deaf community.

Overall, the faculty performed significantly better than non-DCT medical students, especially on questions related to interactions with deaf patients (e.g., how to approach a deaf patient or what to do with children who have hearing loss; Tables 1 and 2). This observation may be the culmination of faculty’s clinical work with deaf or hard-of-hearing persons. Exposure proves to be a differentiating factor even amongst the faculty because faculty without exposure scored the same as non-DCT students in general. However, having a deaf or hard-of-hearing person in one’s social circle did not translate into a better understanding of their difficulties in healthcare. These results suggest that exposure to members of the Deaf community in a clinical setting may be most beneficial in increasing physicians’ cultural competency when a program such as the DCT is not available. Medical schools can benefit from this finding by offering classes or self-paced learning modules that can create deaf cultural competency of medical students, faculty, and attendings.

By evaluating the open-ended responses from the DCT and non-DCT students, it became clear that the DCT students were focusing on problems that extended beyond the Deaf community’s physiologic differences (i.e., inability to hear). The issues listed by the DCT students including difficulty with understanding medical terms, as well as fearing or experiencing mistreatment or maltreatment is a point that would be considered only if one is knowledgeable of deaf culture and deaf history (Table 4).

Recruitment efforts were made to maximize sample sizes, but the number of DCT students was limited in comparison to the other study arms. The DCT student group was self-selected and given a funded fellowship as compensation for the program’s extra burden, and thus does not necessarily represent the interest of all medical students. Thus, study results should be generalized with caution to other medical schools. There was also the potential for variation in the interpretation of a few survey questions that may have limited the interpretation of the results. For example, while it can be inferred that the faculty’s exposure to deaf and hard-of-hearing people is equated with advancing years of clinical experience, the term “exposure” as used in the questionnaire did not specify the qualities of the exposure. Future studies may help to clarify this point. Future studies should also examine whether receiving only the deaf culture training educational materials without the more expansive training program (ASL coursework, ASL immersion, and ongoing ASL and deaf culture training throughout medical school), could produce the same desired level of cultural competency.

Conclusion

Deaf people face challenges in accessing health care which may be ameliorated by providing healthcare providers with cultural competency training. Understanding that the Deaf community is a linguistic and socio-cultural minority will help clinicians more effectively respond to issues of human diversity in the healthcare setting.