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Preventive Attitudes and Beliefs of Deaf and Hard-of-Hearing Individuals
Prashant Tamaskar, BS;
Timothy Malia, MD;
Carolyn Stern, MD;
Daniel Gorenflo, PhD;
Helen Meador, PhD;
Philip Zazove, MD
Arch Fam Med. 2000;9:518-525.
ABSTRACT
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Objective To investigate the unique health care issues of deaf and hard-of-hearing (D&HH) persons by studying their attitudes, beliefs, and behaviors toward preventive medicine.
Design A self-administered, cross-sectional survey, written in a format comprehensible to persons whose primary language is American Sign Language.
Population One hundred forty D&HH persons recruited from southeastern Michigan, Chicago, Ill, and Rochester, NY, and 76 hearing subjects from southeastern Michigan and Rochester.
Results No significant differences existed between D&HH or hearing persons from different states. However, numerous differences existed between D&HH and hearing persons. Deaf and hard-of-hearing persons were less likely to report receiving preventive information from physicians or the media, and more likely to report receiving it from a Deaf club. They rated the following physician-initiated procedures as less important than hearing persons: discussion of alcohol consumption, smoking, depression, and diet, plus screening for hypertension, hearing loss, and cancer. Deaf and hard-of-hearing persons often considered a preventive procedure important if it was reported performed at their last health maintenance examination. They were less likely to report being asked about alcohol consumption and smoking, or to having been examined for hypertension, cancer, height, and weight. They were more likely to report receiving a hearing examination, mammogram, and Papanicolaou smear. Deaf and hard-of-hearing persons were less likely to report believing that smoking less, exercising regularly, maintaining ideal weight, and regular physical examinations improve health. Differences existed within the D&HH cohort depending on the respondent's preferred language (oral English vs American Sign Language); our sample size was too small for a complete assessment of these differences.
Conclusions Deaf and hard-of-hearing persons appear to have unique knowledge, attitudes, and behaviors regarding preventive medicine, and their attitudes are influenced by their personal experiences with physicians. Preventive practices addressed during health visits may differ between D&HH and hearing patients. Further research is needed to clarify the reasons for these differences, including within D&HH subgroups, and to develop effective mechanisms to improve the health care of all D&HH persons.
INTRODUCTION
HEARING LOSS, the second most prevalent chronic condition in the United States, affects approximately 10% of the US population.1-2 As a group, deaf and hard-of-hearing (D&HH) persons present major challenges to the health care establishment. They visit physicians more frequently, have more bed days due to illness and injury, and tend to believe that they are less healthy than hearing persons.2-4 Moreover, many D&HH individuals do not comprehend basic medical terms such as nausea or allergic.5 It has been shown that D&HH individuals have misunderstandings about specific aspects of acquired immunodeficiency syndrome6 and that deaf high school students are not as knowledgeable about health information as their hearing peers.7
Reasons for the higher frequency of hospital visits by D&HH persons, for beliefs that they are less healthy, and for overall lack of health care knowledge are not clear. One possibility may be their communication barrier with medical professionals. Many D&HH individuals communicate primarily through American Sign Language (ASL), which differs grammatically and morphologically from English.8 American Sign Language also differs in its basic mode of communication. English is spoken (oral-aural); ASL is rendered spatially with use of hands, arms, face, and body movements (visual). These D&HH patients are often forced to interact with their physicians in a language they are less comfortable with and in which their comprehension may be limited. Although learning to speak, write, or speech-read English can help in understanding, these strategies are far from being universally effective. Only 1 of every 4 D&HH persons can learn to speak well9; 90% of prelingually deaf adults read at or below a fifth grade level10-11; and only 10% of D&HH persons rely exclusively on lipreading.12
Consequently, the D&HH population is at a high risk for poor physician-patient communication.13 Studies have shown they have difficulty understanding their physicians.3, 5 In addition, physicians feel uncomfortable communicating with D&HH patients, and believe that these persons are less likely to understand diagnoses and recommended treatments.14
In light of these well-documented communication barriers, the issue of preventive medicine becomes intriguing. Because preventive medicine relies heavily on education and communication, knowledge, beliefs, attitudes, and behaviors of D&HH persons toward prevention may differ from those of the hearing population. There is a known deaf culture that also may be influential in attitude formation.15 The deaf community, a documented minority population, has unique traditions and beliefs. Other minority groups—eg, African Americans16 and Latinos17—have been shown to harbor distinctive health care beliefs. It is unknown whether this is true for the deaf community.
The purpose of our study wasto investigate D&HH attitudes toward physician-initiated preventive medicine and various lifestyle behaviors, as well as their actual experiences in having these interventions.
SUBJECTS AND METHODS
SURVEY DESIGN
Our survey featured a combination of newly developed questions as well as previously validated questions from instruments such as the National Health Interview Survey and previous work by our research team.3, 14 The 53 questions covered the following 6 areas of inquiry: degree of hearing loss, importance given to specific health maintenance behaviors, use of health care services, awareness of health maintenance procedures performed by their physician at their last physical examination, current health problems, and demographic information. Most of the questions were multiple choice; there was 1 Likert scale section inquiring about the respondent's attitude toward various preventive interventions.
Because the average deaf high school graduate reads at approximately a fourth to sixth grade level,18 and because many D&HH people use ASL as their main language and struggle with written communication,5, 19 special precautions were taken to ensure that the survey would be understandable. Questions were designed with the help of a bilingual (English and ASL) deaf person and a deaf communications expert (H.M.). The survey was then pretested by 2 other deaf persons, and modifications were made based on their suggestions. A second pretest was conducted by another pair of deaf individuals who used ASL to ensure the survey was understandable. In addition, to further ensure that D&HH individuals would understand the written English, the survey was sometimes administered to D&HH individuals with ASL interpreters available.
The survey administered to the hearing group was identical in form and content to that given to D&HH persons. However, after answering the initial question asking whether the subject had a hearing loss, hearing respondents were instructed to skip the rest of the section dealing with the specifics of their hearing loss.
SAMPLE
The D&HH respondents resided in southeastern Michigan, Chicago, Ill, or Rochester, NY. These subjects were recruited from a variety of sources in all 3 regions in an attempt to sample people with different degrees of hearing loss. The sources for D&HH respondents in southeastern Michigan were a Deaf Club of Washtenaw County meeting in Ann Arbor, a Washtenaw Self-Help for the Hard of Hearing (WASHHH) meeting in Ann Arbor, a meeting for D&HH individuals following services at Our Lady of Loretto church in Redford, and the University of Michigan family practice clinics in Ann Arbor and Ypsilanti. Subjects in Chicago were recruited from the offices of a deaf physician. Subjects from Rochester were recruited from a Catholic Church of the Deaf, a Lutheran Church of the Deaf, a gathering at the Deaf Club by DEAR (Deaf Elderly Around Rochester), and D&HH social gatherings. With the exception of those recruited at the Michigan physician offices, the subjects were mostly D&HH persons with severe hearing losses that occurred before 60 years of age. At the Michigan sites, many subjects had lost their hearing later in life.
At all of these places, the availability and importance of the study was announced, and all adults aged 18 years or older present were given the opportunity to participate. At the Deaf Club of Washtenaw County meeting, there was an ASL interpreter available for respondents; this was not the case for other Michigan sites. The response rate was greater than 90% for Michigan sites and approximately 75% for the Rochester sites.
The hearing control group in Michigan was primarily recruited from a family practice clinic in Ypsilanti, chosen because of the relatively low incomes of the patients attending this facility, a documented characteristic of the D&HH population.20 Other hearing respondents in Michigan were obtained from hearing individuals present at the Deaf Club of Washtenaw County, WASHHH, Our Lady of Loretto meetings, and the Ann Arbor family practice clinic. Hearing persons from Rochester were obtained from hearing persons attending the same Catholic and Lutheran Deaf churches mentioned above, and parents at a local dance school. At the medical office in Michigan, all persons older than 18 years arriving for an appointment or attending the clinic with someone who had an appointment were asked in person to fill out the survey in the waiting room. At the various meetings, hearing individuals attending with D&HH persons were invited to complete the survey. Among the hearing population, the participation rate was more than 90%.
The survey took an average of 15 minutes to complete. Demographic data of those refusing to take part in the study were not available.
STATISTICAL TESTS
Frequencies of demographic characteristics, attitudes toward specific health maintenance behaviors, use of health care services, awareness of health maintenance procedures performed, and health problems were determined in both groups. Independent t tests and, in certain cases, 2-way analyses of variance (ANOVA) and  2 tests were used to test differences between groups. Due to the sample size, we were unable to conduct an analysis of covariance.
RESULTS
DEMOGRAPHICS
One hundred forty individuals (64.8%) participating in the study had a hearing loss of some magnitude, whereas 76 (35.2%) did not. The D&HH population was older and less educated, had lower income, and was more likely to be male (Table 1). There was no difference in their religious preferences. Of the D&HH group, 59.5% reported a profound hearing loss, 18.1% a severe hearing loss, 19.0% a moderate hearing loss, and 3.4% a mild hearing loss. Most of these respondents (91.9%) acquired their hearing loss before 20 years of age.
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Table 1. Relevant Demographic Information*
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Responses of D&HH subjects to questions about their typical communication patterns are shown in Table 2, and indicate a different type and frequency of communication with hearing persons compared with their usual communication. All hearing persons used spoken English as their means of communication.
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Table 2. Frequency and Methods of Communication*
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USE OF HEALTH CARE SERVICES AND HEALTH PROBLEMS
No significant differences between D&HH and hearing persons existed in terms of when they reported their last physical examination. However, the D&HH population was more likely to have had it because of a physician recommendation and less likely because of a job requirement. The D&HH persons were more likely to say they avoided physicians because of communication problems, interpreter unavailability, and other unspecified causes. They were no more likely to avoid physicians because of cost, bad experiences, embarrassment, trust (of physicians or interpreters), or lack of a personal physician. There were no differences reported between hearing and D&HH people for any of the medical problems listed on the survey (ie, alcoholism and other drug use, fatigue, arthritis, heart disease, cancer, high blood pressure, depression, lung disease, diabetes, and stomach ulcers).
ATTITUDES TOWARD HEALTH MAINTENANCE BEHAVIORS
Differences existed between the D&HH and hearing populations in regard to where they reported obtaining their preventive medicine information (Table 3). Hearing respondents were more likely to report receiving this information from their physician, television, books, and the radio, whereas D&HH persons were more likely to receive this information from a Deaf club meeting. There was no significant difference between the groups in how often they received preventive medicine information from family, friends, nurses, newspapers, and other unspecified sources. Within the D&HH group, those who preferred spoken English were more likely to get information from books than those who preferred ASL; otherwise, both groups were similar.
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Table 3. Source of Preventive Medicine Information*
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On a scale from 1 to 5 (with 1 being the least and 5 being the most important), subjects were asked to rate the importance of various health screening procedures. With the exception of the physician asking questions and giving advice about exercise and weight or height measurements, hearing respondents rated every procedure we asked about as more important than their D&HH counterparts did. Table 4 shows the mean scores for all of these items. Within the D&HH group, those who preferred ASL were more likely than those who preferred spoken English to believe that regular screening for cholesterol levels (P=.03), blood pressure (P=.04), and weight and height (P=.05) was important and less likely to believe that screening for hearing (P=.003) was important. There was no difference for the other procedures.
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Table 4. Importance of Specific Health Maintenance Procedures*
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HEALTH MAINTENANCE PROCEDURES PERFORMED BY PHYSICIANS
For the questions about whether their physician performed each procedure at their last regular physical examination, hearing respondents were more likely to report having received weight and height examinations and questions or advice about smoking and drinking. In contrast, D&HH subjects were more likely to report having had their vision examined, and among women, more likely to have had a mammogram. Table 5 documents the percentages of subjects reporting each of these procedures. No significant differences were found between both groups in regard to the other questions, and D&HH respondents were no more likely to report being unsure of whether any of the procedures were performed. Stratifying the D&HH population into those who preferred ASL vs spoken English revealed that the former were less likely to report having been asked questions about drinking alcohol and smoking and showed a trend to having fewer questions about depression; there were no differences for the other interventions.
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Table 5. Procedures Performed at Last Physical Examination*
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For every germane item dealing with health maintenance procedures, D&HH subjects were more likely to rate the item higher if their physician performed the procedure at their last visit. A 2-way ANOVA revealed that these findings were significant for multiple items as shown in Table 6. The hearing respondents showed no such association.
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Table 6. Importance of Procedures Based on Whether Performed at Last Examination*
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BELIEFS ABOUT HEALTH BEHAVIORS
Subjects were presented a list of various lifestyle behaviors and asked to mark those that they believed made people more healthy. There were significant differences between hearing and D&HH respondents regarding several items, as shown in Table 7.
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Table 7. Behaviors Improving Overall Health*
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There were also differences between both D&HH subgroups. Those who preferred spoken English were more likely to state that decreased smoking, increased exercise, and yearly cancer testing were beneficial, whereas those who preferred ASL were more likely to state that gargling with salt water was beneficial.
REGIONAL DIFFERENCES
There were no significant differences among D&HH subjects in southeastern Michigan, Chicago, or Rochester, and no significant differences between hearing persons in southeastern Michigan and Rochester.
COMMENT
Our results suggest that attitudes and behaviors in regard to preventive medicine differ between D&HH and hearing persons. The groups in our study were different in some demographic areas (income, age, education level, and sex distribution). With the exception of the male-female ratio, however, these demographic differences are consistent with previous findings.2-4 We were unable to control statistically for demographic variables due to our sample size, however, and thus we cannot eliminate the possibility that this influenced our results.
USE OF HEALTH CARE SERVICES
Previous studies have recurrently documented differences in frequency of physician visits2-4 between hearing and D&HH populations; we did not address this issue. We did look at how long it was since respondents reported they last had a health maintenance examination, why they had it, and if they avoided physicians for any reason. The D&HH persons were more likely to report avoiding physicians because of communication problems and lack of an interpreter. Of interest is that cost did not appear to be a factor (despite the lower income of D&HH persons), suggesting that the communication barrier is a more important problem for them. However, it is unclear if communication really is the only major issue, or if there are other causes such as cultural beliefs. After all, not only do D&HH persons already visit physicians more frequently but evidence also suggests that those who use interpreters visit physicians even more than those who do not.3 A comprehensive interventional study, with and without interpreters, may help us clarify the answer.
HEALTH PROBLEMS
In a finding that is inconsistent with studies detailing higher incidence of bed days due to illness among D&HH persons,2, 4 D&HH persons reported no greater frequency of having any of the medical problems we inquired about. This disparity may be due to the recruitment of a disproportionate number of our hearing subjects from medical offices, whereas most of the D&HH subjects came from other settings. Thus, our hearing respondents may have more health troubles than a typical population sample. If true, this suggests that medical problems may have been overstated in this group and in reality, D&HH persons have more comorbid conditions. This needs further study, as does the possibility of other confounders, such as that we inadvertently excluded a medical problem that is more common in D&HH persons, or that they did not understand the written names of the medical conditions we listed.
IMPORTANCE OF HEALTH MAINTENANCE BEHAVIORS
Compared with hearing persons, D&HH persons were less likely to report receiving preventive medicine information from their physician, television, radio, or from books, and more likely to receive information from clubs. Although it is not surprising that the D&HH population is less likely to use the media, the fact that they are less likely to report receiving information from physicians is concerning.
Our D&HH respondents rated nearly every physician-dependent health maintenance procedure as less important than their hearing peers did. Four of the 5 items requiring a physician to ask or advise about specific issues and that are currently considered to be important interventions by the medical community (alcohol consumption, depression, diet, exercise, and smoking) were rated as less important by the D&HH group. We think there are 2 possible explanations for this finding. First, these items require good communication between physician and patient, and since this does not usually occur between physicians and D&HH patients, this may influence the feelings of D&HH patients about the items. Second, physicians may have ignored these issues because of time pressures (due to the difficulty communicating), leading D&HH patients to believe that these questions are of little importance.
When asked which behaviors make people healthier, D&HH people were significantly less likely to respond with well-known beneficial behaviors (such as smoking less and exercising more). Perhaps this is due to insufficient education of the D&HH population, or they may have reduced exposure to mass media information. This would be consistent with the findings elsewhere3 that D&HH persons smoke less. It would imply that although they may not be as aware of the adverse consequences of smoking, they are also less inclined to smoke in the first place because of reduced exposure to advertising. However, we believe that other factors such as cultural beliefs may be involved as well, because the D&HH group was no more likely to rate behaviors of questionable physical benefit (eg, having regular massages and gargling with salt water) as improving health.
HEALTH MAINTENANCE PROCEDURES PERFORMED BY PHYSICIANS
Our D&HH respondents were less likely to report having several health maintenance procedures performed (such as having their blood pressure checked, and being asked or advised about smoking) at their most recent physical examination. This suggests that D&HH and hearing groups may not be receiving the same preventive medical services.
As intriguing as this sounds, it is outweighed by a couple of other findings. First, the D&HH respondents were no more likely to report being unsure of whether a specific procedure was performed than the hearing group. Thus, D&HH patients are aware of what is occurring when they are being administered a physical examination. They seem to understand what procedures are taking place and are not as uninformed as some may believe.
Second, for every item on the survey inquiring about the importance of specific physician-dependent health maintenance procedures, D&HH subjects were more likely to rate the item higher (ie, more important) if their physician performed the procedure during their last regular examination. Thus, if D&HH subjects reported their blood pressure checked at their last physical examination, they would view regular blood pressure tests as more important than if they did not have it checked. This relationship did not occur with the hearing group.
This seems contradictory to the finding that D&HH persons receive less information from physicians than hearing persons. It could be that differences in attitudes toward preventive medicine may be molded indirectly from observing what procedures their physicians recommended. That is, D&HH persons are getting preventive information from physicians indirectly, although they may not have received it through direct discussion with that physician. Moreover, the possibility that there are cultural influences is another possibility. Such unique attitudes and beliefs have been shown for other minorities. The deaf community has known different attitudes toward other medical interventions such as cochlear implants, and their beliefs about preventive medicine may be similarly affected.
Finally, we were intrigued by some of the findings demonstrating differences between both subgroups of D&HH persons. Although this was not the main purpose of our study, and although our numbers were not large, these findings highlight the complexity of the D&HH population. One would expect intuitively the ASL population to give lower ratings for screening for proven measures because they have greater communication barriers to receiving information. We found the opposite.
People who prefer ASL are more likely to have acquired their hearing loss early in life and be part of the deaf community, spending most of their social life with individuals in that group of people.21-22 Those who prefer spoken English associate more with hearing society and thus develop different values and goals. We had few persons older than 65 years, but we suspect that that group (composed of persons with presbycusis) constitutes a third distinct subgroup of D&HH persons. This clearly shows the complexity in analyzing data involving D&HH persons, and highlights again that various factors may play a significant role in how the different subgroups of D&HH persons interact with their physicians. Future research within this population needs to take into account the differences in these subgroups and investigate the extent to which communication and beliefs affect their use of health care services. For example, a potential avenue to introduce accurate information to D&HH persons is the use of peer educators.
LIMITATIONS
There are several limitations to our study. First, the D&HH and hearing respondents were nonrandom groups that may not have been truly representative of their general populations. Active members of Deaf clubs, for example, may not be similar to D&HH nonmembers. Because of their role in the various groups, they may form different opinions or have access to more or different types of health care information than D&HH persons who do not attend club meetings. Second, the hearing sample was gathered mainly from medical clinics, and these persons may be atypical of hearing populations in general in their area. For example, they may have greater access to (or place greater emphasis on) preventive medical information than other hearing persons as well as D&HH persons.
Third, demographically, the groups differed in terms of income, education level, and age. Although these are factors that have been documented in numerous publications as disparate between the populations,2-4,10, 19-20,23 they nevertheless may have affected the findings. We were unable to control for this due to our sample size. In particular, our population was primarily white (hearing and D&HH), and 83.7% of our D&HH population had lost their hearing before 6 years of age, most (59.5%) of whom had a profound hearing loss. This raises the question of the applicability of our results to persons of other ethnicity, persons who lost their hearing after 6 years of age, and persons with a less severe hearing loss.
Fourth, there is the possibility of recall bias. We believe this was not a major issue, as not only should this apply equally to D&HH and hearing persons but also that some of our findings were similar to those of other studies,3, 7 suggesting that our data were accurate.
Fifth, although the reports by our D&HH respondents suggest that physicians practice differently with them than with hearing patients, this conclusion is based solely on self-reports. The only way to be sure this is the case is to conduct an observation study of physician behavior.
Finally, respondents were not provided the option of completing the survey in ASL. Although the survey was pretested to ensure its lucidity to D&HH persons who read English poorly, the possibility exists that some questions were too difficult to understand for some of them. In fact, a few respondents mentioned that they had some difficulty comprehending the survey.
CONCLUSIONS
We showed that beliefs about many preventive health behaviors differ between hearing and D&HH persons; that physicians' behaviors in the examination room appear to affect D&HH patients' attitudes about preventive health issues disproportionately; and that physicians appear to practice different preventive interventions with D&HH patients than hearing persons. We also found that D&HH persons who prefer ASL showed several differences than those who preferred spoken English, consistent with the supposition that these are different groups.
Solutions to some of the above findings have been suggested elsewhere.24-25 Until further studies determine the reason for these differences and document the benefits of specific interventions, we suggest that physicians pay particular attention to ensuring that they have good communication with their D&HH patients and be cognizant of the potential for unique cultural attitudes and beliefs among these patients that may affect their health care.
AUTHOR INFORMATION
Accepted for publication March 9, 2000.
A copy of the survey is available on request to the corresponding author.
Reprints: Philip Zazove, MD, Department of Family Practice, University of Michigan, 7300 Dexter–Ann Arbor Rd, Ann Arbor, MI 48130 (e-mail: pzaz{at}umich.edu).
From the Medical College of Ohio, Toledo (Mr Tamaskar); Lifetime Health, Marion B. Folsom Center, Rochester, NY (Drs Malia and Stern); and the Department of Family Practice, University of Michigan (Drs Gorenflo and Zazove), and Deafness Consultant (Dr Meador), Ann Arbor, Mich.
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