People who are deaf and use American Sign Language (ASL) have much in common with members of other linguistic and cultural minority groups.⁵ These similarities include limited access to English language-based communication, infrequent contact with clinicians familiar with their language and culture, and the challenging experience of working with family members and friends as interpreters. Not all deaf people are members of the cultural minority group that uses ASL. This community is commonly distinguished with an upper-case “D” in “Deaf,” while “deaf,” with a lower-case “d,” refers to the audiologic lack of hearing.⁶ The size of this community is not known since the U.S. Census and other national surveys do not ask about ASL use; estimates range from 100,000 to 1 million.⁵ Most adults who communicate with ASL became deaf in childhood; of all deaf adults, 8% became deaf prelingually (before age 3) and another 11% became deaf between the ages of 3 and 19.¹

In this study, we explore experiences with health care in the Deaf community. We gathered information using focus group interviews conducted in ASL because of the English literacy limitations of deaf adults⁷ and because ASL is the preferred language for members of the Deaf community.

At the time of the focus group meetings, we collected some sociodemographic and health information from participants using a written questionnaire (1 two-sided page; Appendix A). For participants who had difficulty reading or understanding the questionnaire, interpreters were available to translate the questions into ASL.

The research team developed a focus group facilitator guide that included sample questions and discussion topics (Appendix B). Deaf and hearing research staff facilitated the focus groups in ASL. Certified interpreters, some with native ASL skills (i.e., hearing children of Deaf adults), attended the focus groups and voiced the ASL discussions into a tape-recorder. Researchers present at the focus group reviewed the typed transcripts for accuracy.

Hearing and deaf researchers on the analyses team each reviewed the transcripts and identified key reoccurring concepts, ideas, and incidents. Researchers discussed these themes during face-to-face meetings and over email to further refine the themes. We developed a coding system based on those themes and used the text-based qualitative research software package Folio VIEWS⁸ to help manage the data. The few coding disagreements were reviewed and discussed by members of the analysis team until consensus was reached.

We chose not to video-record the focus groups because of the difficulty in clearly capturing the ASL of each focus group participant and facilitator. Researchers were cognizant of the limitations of analyzing the English translations. For example, personal pronouns in ASL are not gender specific but the transcripts all used gender-specific pronouns since English does not use the pronoun “it” to refer to people. Sometimes, the focus group discussion preceding the pronoun indicated to the interpreter which English gender pronoun to use; other times, the interpreter had to choose a gender pronoun. Quotes in the transcripts (and this article) that use the words “his” and “he” do not necessarily mean that the physician (person) referred to is a man.

The 3 study sites permitted us to explore a variety of Deaf experiences. We conducted focus groups in a medium, large, and very large city. Since the U.S. Census does not collect information about ASL, it is difficult to compare the 3 Deaf communities. Rochester is thought to have a high per capita Deaf population with a higher median education level, partially because of the presence of National Technical Institute for the Deaf. We did not compare focus group results between cities; the only difference that emerged during analyses was the mention of ASL-skilled clinicians in Rochester. This may be an artifact of the samples; at the time of the study, all 3 cities had at least 1 clinician with ASL skills and at least 2 cities (Ann Arbor and Rochester) had a deaf family physician (birth or childhood onset).

Participants' reports of difficulties with written communication are not surprising; the median reading level of deaf high school graduates in the United States is fourth to fifth grade⁷ and the medical vocabulary knowledge of U.S. Deaf adults is similar to that of non-English language immigrants to the United States.⁹ Difficulties with speechreading are also not surprising; only 30% to 40% of spoken English is visible on the lips.^10,11 Despite these difficulties, some participants used these modalities to communicate about their own and their families' health. We suspect that because health is so important, and because interpreters were infrequently available, participants felt pressured to try any method in an effort to communicate. In 1 study U.S. Deaf adults were less likely than non-English language immigrants to communicate with their physician in their primary language⁹ (Table 5).

Participants' reports that interpreter services were infrequently available are consistent with the findings of Ebert and Heckerling.¹⁰ Physicians surveyed in their study reported that they worked infrequently with interpreters even though they recognized that communication was best via interpreter services. Some of our participants thought that interpreter services would be used more frequently if there were wider recognition that all parties involved, and not just Deaf people, benefit from improved communication. In our focus groups and in those conducted by Witte and Kuzel,⁴ deaf participants suggested that the expense of interpreter services may account for its infrequent use. Some physicians have cited the unreimbursed cost of interpreter services as a barrier to working with interpreters.^12–14

Participants preferred working with medically experienced interpreters or with health care practitioners with sign language skills. This is consistent with the findings of MacKinney et al.,¹⁵ who found that deaf adults seeking care at a clinic with easy access to interpreter services reported higher satisfaction with health care communication, and were more adherent with some preventive health recommendations than deaf adults who sought care elsewhere. For mental health settings, Steinberg et al.³ found a preference for practitioners who are fluent in ASL and for practitioners who are deaf. We did not ask specific questions comparing hearing and deaf clinicians in our focus groups and cannot draw any conclusions on this issue as a consequence.

Participants perceived their practitioners to have insufficient knowledge regarding deafness and suggested medical education programs as a potential solution. Ebert and Heckerling¹⁰ asked physicians 5 questions regarding deafness; most physicians overestimated the accuracy of speechreading but answered the other 4 questions correctly. A more thorough analysis of practitioners' knowledge regarding deafness may help to identify areas to focus educational efforts. Participants' perception of prejudice in the health care system is consistent with reports of deaf people in another study⁴ and findings about physicians' attitudes toward working with deaf patients.¹⁶ Although there are a few publications regarding medical education and deafness,^5,17–22 the impact of these programs on the attitudes and experiences of deaf patients, their families, and their health care practitioners has not been examined.

Participants' experiences of the health care system were often associated with stress and strong negative emotions. This may partially explain the research that indicates that prelingually deafened adults are less likely to visit a physician than adults in the general population.¹

Findings from this study suggest areas for research. The knowledge and experiences of clinicians regarding deaf patients should be further explored, including the reasons for not arranging for interpreter services. Advanced education programs in health care interpreting should be offered, and their impact on health outcomes studied. Deaf people sometimes reported not requesting interpreter services from their clinicians. Self-advocacy educational programs should be tested to see how they impact frequency of use, satisfaction, and outcomes of care. Programs that teach health care students and professionals about deafness should also be studied. National surveys of health and health care experiences should include individuals who are deaf,^23,24 and information regarding the nature of the hearing loss and preferred language should be included in the data collection. This will facilitate accurate assessments of the impact of technical innovations such as see-through surgical masks, computer software that converts spoken language to written text, video relay service (VRS, see Table 4), and remote sign language interpreter services using videoconferencing equipment with high bandwidth connections (VRI, see Table 4). Finally, programs that help interested deaf people to enter careers in the health professions should be examined to see their effect on health care system access for deaf people and their families.

In addition, Deaf people who elected to participate in the study may have had different health care experiences than those who decided not to participate. Our study participants were more highly educated and more likely to have seen a physician in the preceding 2 years than a national sample of prelingually deafened adults;¹ perhaps participants' recent experiences in the health care system contributed to their motivation to be involved in the study. Although we suspect that many of the experiences described in the focus groups are common in the U.S. Deaf population, the prevalence of each type of experience may be different and some other experiences common in the U.S. Deaf population may not have been identified by focus group participants. Given the limitations of our sampling design, our results do not generalize beyond the focus groups we conducted.

Our study was not designed to compare health care experiences in different cities. The 3 cities and their health care systems are quite different. We do not have information that describes the Deaf community in each city, so we could not recruit participants to reflect the sociodemographic characteristics of the local Deaf community. The Deaf community organizations that helped recruit focus group participants were different in each city (examples include a gay/lesbian Deaf organization and an organization of older Deaf adults). Given these differences, subgroup analysis, based on geography or other sociodemographic characteristics, would be difficult to interpret.

Appendix A

Appendix B