This is one of the few published studies to explore Deaf adults' experiences in the health care system. The use of focus groups allowed us to learn about the breadth and depth of participants' perspectives and experiences. This methodology is consonant with Deaf culture; gatherings are considered opportunities for sharing information and topics often considered private to hearing individuals are openly discussed by Deaf individuals in moderately large groups.
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
Comparison of the Deaf Community and Some Other Language Minority Groups
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 ), and remote sign language interpreter services using videoconferencing equipment with high bandwidth connections (VRI, see ). 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.
Physicians can take steps now that may improve the health care experiences of Deaf people and their families. Clinicians should ask patients if communication is effective and how it could be improved. Physicians and physician organizations should lobby government agencies and insurers to create a system whereby physicians are reimbursed for interpreter expenses, or professional interpreters could bill third-party payers directly for their services. To facilitate telephone communication, physicians' offices could establish a separate number for TTY and relay service callers (TRS or VRS) that avoids the automated menu system or permits them to exit the automated system quickly (e.g., “If this is a relay service call, press 1 now to speak with a receptionist.”).