Editors Note: The original article (as published in the Hearing Review) was a podium presentation for a professional audience. Due to the importance and depth of this fine presentation, we have minimally re-edited this article for the non-professional audience, to help transfer the knowledge and concepts in a non-technical manner. We appreciate Dr. Mark Ross and Mr. Karl Strom, Editor-In-Chief of the Hearing Review, for allowing us permission to republish this important work. Douglas Beck, Au.D., Editor-In-Chief, Healthy Hearing (www.healthyhearing.com)
When Geoff Plant asked me to give this keynote presentation, he said to be sure that I included some of my personal experiences as a hard of hearing person. Actually, I wasnt sure if I could or should do this, since I dont feel all that comfortable talking about myself. On reflection, however, it really may be a good way to introduce a conference on Aural Rehabilitation (AR), since I believe there are lessons we can draw for the present day from my personal experiences a half-century ago
My hearing loss was detected in l951 while I was in the Air Force. I think its onset occurred during an earlier period of military service. Of course, like just anybody else with hearing loss, I knew I had some hearing difficulties and, like many other people in the same predicament, I simply tried to ignore its presence, getting along as best I could. At the time, the only help I would have considered would have been medical or surgical -- some way to "cure" or "fix" my hearing loss. Fortunately for me, I was not given a choice.
After I was given an audiometric test, which clearly revealed the presence of hearing loss, the next thing I knew I was transferred to Walter Reed Hospital, as an involuntary participant in their AR program. But not before the examining otolaryngologist told me that I had "progressive hearing loss" and that I would soon be going "deaf!"
It was only many years later that I realized the doctors definition of "deaf" and my definition of "deaf" were quite different. Without hearing aids, I would indeed be "deaf", but certainly not with them. From my perspective, the only definition of "deaf" that counted was my ability to use audition as my primary communication mode. The fact that I can still do this, even with a bilateral 90 dB hearing loss, tells me that I am not functionally "deaf". That doctor did me, and Im sure many other patients, a great disservice when he employed a term in one way that most people would understand in a different way. Simply said, his comment scared the hell out of me and this fear stayed with me for many years, until I learned better.
In any event, the Air Force gave me no opportunity to object to the transfer, or to engage in the usual and agonizing self-defeating exercise of denial. Ironically, it now appears that one of the merits of this entire process may have been the fact that I did not have a choice: being in the military, I was simply ordered to go and I did. In my case, there was not the usual seven-year delay between the symptoms of a hearing loss becoming apparent and the acquisition of hearing aids. Clearly, the military model is not a model we can follow in civilian life, however we might sometimes wish it.
The Walter Reed AR program lasted for two months, during which time the participants were all boarded together in a separate facility. All day every day we went to various classes, ranging from general information about hearing loss to speechreading and auditory training. At the beginning of the program we were issued hearing aids selected for us by the traditional Carhart procedure (an early hearing aid selection protocol). We were each tested with about four to six aids, trying to determine which one was "best" for us. The measures included unaided and aided speech discrimination tests in quiet and in noise, comfort and uncomfortable determinations, and both use and full gain aided speech reception threshold (SRT) tests. "Best" was defined in terms of higher speech discrimination scores, wider dynamic range, lower aided SRTs, and subjective preferences. Cosmetic preferences, as can be imagined, never came up.
This test battery would take almost a complete morning or afternoon. Even so - that was not the end of the process. About once a week, I returned for follow-up testing and such "fine-tuning" as could be done in those days. Complaints and problems with the hearing aids and earmolds were handled almost immediately. However, it is important to note that unlike today, where the provision of hearing aids is often considered the end point, in my AR program, the hearing aid was just one component of a comprehensive AR program.
The formal program was supplemented by many "bull-sessions" and informal exchanges between and among clients that took place during, in-between, and after classes. Although we did not use the term "coping and communication strategies", that was in essence, what was going on. We shared our hearing experiences, some of our feelings (being "macho" young men we didnt delve too deeply into ourselves) and examples of what kind of communication tactics worked and did not work. Actually, in retrospect, these experiences were probably the most valuable aspect of the program. The group interactions provided the kind of emotional support impossible to replicate in individual counseling sessions. This is definitely a lesson that we can take to heart even now.
Although we thought we were learning to lip-read and how to make better use of our residual hearing, and some of us undoubtedly were, what was also happening was that we were learning how to accept the hearing loss and accept ourselves. We would joke with one another about "being on the air" when we put our hearing aids on and, by example, encourage those who were reluctant to wear them. Unlike the pressures new hearing aid users often feel that can lead to them to discard their hearing aids feeling "different", stigmatized and a bit ashamed - the social climate in the AR program was exactly the opposite. It was expected that everybody would "conform" to the accepted practice by regularly wearing his hearing aids. The fact that the program lasted for two months made it easier to continue our good hearing aid habits after we left.
The hearing aids we were issued were monopack vacuum tube hearing aids, requiring an "A" battery that had to be changed every two or three days and a "B" battery that would last a week or two. We felt very lucky to be the recipients of these "small" convenient instruments, particularly since the groups who preceded us were issued duo-pack hearing aids; those required a battery pack physically separate from microphone and amplifier. Besides, being in the service, we could hardly insist on receiving more "cosmetically acceptable" devices. First, because this kind of demand was simply unheard of in those days, and second, cosmetic concerns, even if we could conceive of how far down the ear canal it has taken us nowadays, was simply not an issue. We wore what we were ordered to wear, based on professional judgment regarding what was considered "best" for us. Nowadays, unfortunately, professional judgment regarding performance often takes a distant back seat to a patients expressed cosmetic concerns.
After the AR program, I spent three years in the Air Force, spending much of that time in North Africa where, I believe, I may have been the only person wearing hearing aids, if not on the entire continent, at least in the immediate region. Theres another, very important lesson, here for the present day: Because I accepted the fact that I had to wear hearing aids, and accepted myself on this basis, I truly believe the presence of my hearing aids was completely irrelevant as far as my work and social activities were concerned. I didnt make a big deal about the fact that I wore hearings aid and consequently, neither did anyone else. If somebody asked about it, I simply said it helped me hear like eyeglasses help someone see. I cant think of a time when this explanation did not suffice. Ive never accepted the notion that wearing a visible hearing aid is associated with a negative personal appraisal, some kind of social stigma invoked by society on hearing aid users, or what has been termed the "hearing aid effect". Of course, I do know that some people in our society may initially judge hearing aid users as less competent and less desirable, etc. But, Im convinced that, given self-acceptance, their attitudes will soon either be irrelevant or changed. Instead of confronting this presumed "stigma", however, we pander to it by focusing on cosmetics rather than performance and need.
I should point out, however, that even with the exemplary Walter Reed program, I must have still felt a great deal of uncertainty about how the hearing loss was going to affect my life. Given the initial diagnosis of "progressive hearing loss", I was understandably insecure about the future. When I returned to the U.S. from North Africa, I asked to be transferred to Walter Reed hospital so that I could take the AR program once again. To its credit and to my benefit, the Air Force agreed to my request.
In a sense, what I was asking for was an AR "booster" shot. Even more than my first experience, I believe it was at that time that I truly came to terms with the fact that I had permanent hearing loss. It was at that time that I accepted the notion that while its presence was clearly going to produce some difficulties in my life, the fact that I was hearing-impaired need not restrict the course of my life in any fundamental way.
There are lessons we can draw from this for the present day. Just because we have, or think we have, provided what we believe to be an appropriate AR program to our patients, that does not mean that they will thereafter be "cured" and never darken our doors again. As we well know, it doesnt work that way. We know that peoples hearing loss and their communication needs change over time. We know that much of what we covered and what we thought we had resolved initially may have been forgotten. And we know that new devices and techniques are constantly being introduced, which may offer benefits previously unavailable.
Our clients often need a "booster" shot from us, a provision that should necessitate a routine follow-up program.
The "Stigma" of Wearing Hearing Aids
Majoring in "Speech and Hearing" when I left the service brought about a whole new set of lessons that have stayed with me. Actually, the primary reason I started college was to learn enough about audition and hearing aids to be a knowledgeable hearing aid salesman. So for the first year I was at college I sold hearing aids part time. In all that time, I sold just one aid, and only because one of my brothers arranged the sale! I worked by knocking on the doors of people who had made some sort of inquiry in the past. Their responses really exposed me to some of the attitudes about hearing loss that pervaded our society then and, to a large extent, now. People would deny they had hearing loss while I had to shout at them to be heard! Or they would be very upset that I somehow knew about this terrible secret of theirs. After all, they were promised when they responded to an advertisement that they would be sent material in a plain brown envelope, so nobody would know they inquired, and that no salesman would come knocking at their door. And here I was exposing their shame and stigma for all the world to see!
Salesmen were advised to stress how small and invisible the hearing aids were. These, we should note, were body aids! All kinds of tricks were played to minimize visibility, from transparent tubing that ran from the earmold to the receiver pinned under the collar, to beret style aids that were placed in the hair. Fifty years later, were still doing the same thing. It doesnt matter how technically advanced hearing aids have become, or how tiny these really sophisticated devices are; theyre still not sufficiently invisible for many people. And for some, they will never be small enough.
Its clear that the problem is not the visibility of the hearing aids, but rather the acceptance of the hearing loss. In the fifty years that Ive been involved with this field, we are still communicating mixed messages. On one hand, we justifiably stress the technical advances incorporated in modern hearing aids. At the same time, however, we emphasize how tiny they are, how they can fit all the way down in the ear canal and that nobody "need know theyre wearing hearing aids."
What is happening is that we are reinforcing the very denial attitudes we are trying to overcome. By stressing invisibility, we convey the message that there is something shameful about hearing loss, that it is a stigmatizing condition that people must disguise as well as they can. Im convinced that more potential hearing aid candidates are discouraged from trying needed amplification by this type of appeal than are motivated to try them by the cosmetic arguments. People dont "hear" the cosmetic appeal as loudly as they do the underlying shame and stigma message. If we cant get people to acknowledge that they have hearing loss, there is nothing we can do to help them. Clearly, they are not ready to help themselves. One measure of our success in this endeavor would be the percentage of people who can potentially benefit from amplification who actually wear hearing aids. In this country, that figure is usually considered to be about twenty percent - not a very impressive record.
Taking Hearing Loss Seriously
In order for this percentage to increase, there has to be more awareness
regarding the potential consequences of hearing loss, that it can, and often does, impact on every aspect of a person life. However, instead of some measure of empathy, what we often get are insensitive comments like "she can hear if she only pays attention".
If society underestimates, mocks or trivializes the total impact of hearing loss then it is unlikely that any type of AR program will be supported or encouraged. The condition would not be considered a severe enough public health problem to warrant public resources allocated to its remediation.
At a time of limited resources and rising expectations, such an understanding is crucial if AR is to receive its justified portion of the health-care pie.
If we only had to convince the general public and policy makers regarding the potential implications of a hearing loss, and the need for AR services for most people with hearing loss, then our challenge would be straightforward, if not easy.
Unfortunately, it seems to me that before we educate others, we need to start by educating ourselves.
The hearing aid selection and dispensing model most often employed by hearing aid dispensers focuses on the instrument - the hearing aid itself, rather than the person with hearing loss. In the ordinary sequence, a client first receives an audiological evaluation, then the hearing aid is selected and several follow-up appointments are scheduled.
In the current hearing aid dispensing model, the average total time devoted to all of the activities associated with the hearing aid acquisition, from the initial testing and personal interview to the actual selection, fitting, follow-up and counseling is little more than two hours (Stika and Ross, 2001). Less than an hour is spent on the counseling component (Kochkin, l999). Perhaps the current model provides sufficient time for these activities. But there certainly will not be time to deal with other personal and social issues arising from hearing loss. The current hearing aid dispensing model implies that all hearing-impaired people need to correct their problem is an auditory prosthesis, i.e., a hearing aid. This is clearly not the case.
The fact that people want and need more information can be seen in the marketing survey prepared for the AAA (Audiology Today, l998). Almost half the hearing-impaired people who responded to the survey reported they would have liked more information on how to select, wear, and care for hearing aids. About forty percent of them wanted to learn more about the causes and treatment options for hearing impairments. Even this relatively high number probably underestimates the number of people who could use and benefit from such information.
It is not as if there is any real dispute among professional audiologists regarding the consequences of hearing loss. Indeed, there is also an enormous body of literature on this topic, much too much to review in any detail here. For example, Carren Stika reported the results of the many focus groups she conducted with hard of hearing people and their significant others (Stika, 1997a;l997b). The fact that hearing loss can have a pervasive and profound effect upon the affected person and his/her family was clearly demonstrated in this project.
Implicit in the current hearing aid dispensing models is the assumption that the provision of hearing aids are both a necessary and sufficient response to the hearing loss condition. This model implies that hearing aids can functionally "cure" the hearing loss and that further services are either unnecessary or not cost effective. We would all agree that hearing aids are an absolutely necessary measure to take in most instances of hearing loss. However, I would hold that for most people, hearing aids alone are insufficient.
Of course hearing aids help, and of course most people, comparing their ability to function with and without hearing aids, do better with them than without them (Kochkin & Rogin, 2000). No doubt, many people would believe, at least initially, their hearing problems have been "solved" or at least rendered functionally irrelevant by the hearing aids. Not knowing any better, they accept less than is possible and live with the resulting limitations and problems while enjoying the benefits. This is not good enough. We can do better.
For example, about 16% of people eventually stop wearing their hearing aids, and a similar number rate their hearing aid usage as unsatisfactory (Kochkin, 2000). Satisfaction percentages seem to hover somewhere between 60 and 70 percent. Importantly, we know that additional counseling and follow-up programs can reduce the number of returns and increase benefits, use, and satisfaction rates (reviewed in Ross, 1999; Kochkin, 1999). Indeed, a number of papers explicitly address the organization, advantages, and cost effectiveness of AR procedures that go beyond merely providing hearing aids or cochlear implants.
Services and Information Needed by Hearing Aid Wearers
Lets consider the services that hearing-impaired people require when they finally arrive at a hearing center. It is important to keep in mind that we would not be seeing these people if their hearing problems had not, somehow, become personally intolerable or if they had not finally succumbed to repeated nagging from some significant other.
What, then, are our professional obligations to them? The ostensible reason they come to us is for professional advice regarding hearing aids. And, of course, the proper selection and instruction in the use of hearing aids still has to be a paramount consideration. The implicit reason they see us, however, is not for hearing aids per se, but because they want help in minimizing the hearing-related problems they are experiencing. Well-selected hearing aids are just one tool, albeit the major one, that addresses this issue. There are other services and information we can provide that will help people reduce the total impact of hearing loss on their lives. The clients may not be aware of these other services, but shouldnt it be a professional responsibility to make these services known to them? What I am suggesting is a focus not on a product, but on the rehabilitative process. It is when patients show up at our door asking for help with hearing aids that we have the best opportunity to address the totality of their hearing-related problems. So what services am I talking about?
- All prospective hearing aid users require a comprehensive audiologic evaluation. This may sound self-evident, but what with hearing aids being sold through mail order and the internet, it cannot be considered a given. A component of this evaluation should be devoted to an extensive personal interview.
- Either preceding or immediately following the personal interview and audiologic evaluation, the client should have an opportunity to complete some type of standardized self-assessment scale. The same scale should be administered after the person has worn hearing aids for some time. In a recent chapter, Abrams & Hnath-Chisolm (2000) provide a comprehensive discussion of outcome measures, with examples of the different types that can be used for different purposes. Their rationale extends beyond providing data regarding therapeutic effectiveness and institutional accountability. Responses to self-assessment scales can help guide the nature of the therapeutic process.
- Many, perhaps most, people with hearing loss can benefit from a group hearing aid follow-up program. The follow-up program is to supplement, not supplant, individual counseling. This gives clients an opportunity to review and share their listening experiences with other people with hearing loss. The mutual support people give each other transcends that which professionals can provide. Some topics, such as advantages of binaural hearing aids, can be covered more convincingly when someone else in the group relates personal experiences, rather than when the recommendation appears to be tied to a dispensers self interest. Reluctant hearing aid users, or those who feel that "it is just too much" trouble can be encouraged appropriately by their peers and colleagues.
- People need general information regarding the cause of hearing loss and treatment options. People deal with problems more effectively when they have a greater understanding of its nature. Many people come to clinics wanting and expecting to be "fixed" medically or surgically. They have to understand why some types of hearing loss are not amenable to such treatment and that the best single "treatment" is often a well-functioning hearing aid.
- People need information about the listening implications of their own audiometric results (for example, why so many people seem to be "mumbling", and why they can often "hear" but not "understand"). This is the kind of topic that dispensers tend to gloss over after the 1000th time they explain it to clients. It is difficult, but necessary to provide such information each time, as if it were the first time.
- The "significant others" in each persons life should understand the communication implications of their loved ones hearing loss. By listening to others make complaints similar to their loved ones, they can more fully appreciate the problems. One useful technique is to play a tape of filtered speech to the normally hearing significant others.
- People need information regarding how to care for their hearing aids and earmolds. They need to know why one type of hearing aid was selected rather than another. This leads to a discussion of the particular features of their own hearing aids, what they do, and why they were included (e.g. directional microphones, T-coils, presence or absence of volume controls, personal FM capability, direct audio input, multi-bands, multi-memories and so on). This kind of information takes time to convey and group presentations can supplement individual instruction.
- A group setting lends itself to help people develop realistic expectations of what hearing aids can and cant do. Some peoples expectations may be unrealistically high, while others set theirs too low. People have to understand what hearing aids can and cant do. This discussion leads naturally to the topic of other types of hearing assistive devices.
- The evaluation and dispensing of other types of assistive listening devices (ALDs) is, in my estimation, one of the biggest weaknesses in present hearing aid dispensing practices. For some people, specific ALD devices can significantly improve their quality of life as well as directly impact upon job performance. Virtually everybody in our society is required to use a telephone and importantly, telephone communication can be improved for almost every person with hearing loss. Virtually everybody watches TV, goes to the movies, attends lectures or concerts, or visits houses of worship. In each of these venues, it is possible to improve listening comprehension with an assistive listening device. Some people will function better on the job if they can use a personal FM, a conference microphone, an amplified telephone, or a vibrating pager. The need for such devices may not be immediately apparent; it requires an explicit evaluation to make this determination.
- People with hearing loss can benefit from information about various kinds of communication and repair strategies that can be used to enhance interpersonal communication. This should include a presentation and discussion of the basic principles of speech reading. With a little practice and focus on the lips and face, hearing-impaired people can improve their comprehension of the spoken word. They should know about the concept of assertiveness, when and where it would be appropriate, and encouraged (via "homework") to practice it in their everyday lives.
- Finally, even after receiving the services specified above, many people with hearing loss still need the continuing support of others in similar circumstances. The astute audiologist will keep an open channel to a local chapter of Self Help for Hard of Hearing People, Inc. (SHHH) and make his/her clients aware of the potential contribution of this consumer support group.
Does everybody with hearing loss require all of the above? Probably not. But we should begin, with the clinical assumption that anybody who needs hearing aids to improve communication functioning can benefit from most of them.
The record in this regard is mixed (Stika & Ross, 2001). The key limitation is time -and how to find it. It takes time to listen to our clients and to deal with communicative, as well as the psychosocial implications of hearing loss. It takes time to conduct a group hearing aid orientation program. It takes time to evaluate the need for and to provide assistive listening devices. And it takes time, particularly for older people, to work through hearing aid fitting procedures until they reach the point that they are receiving the full benefits of hearing aid amplification. As we keep hear over and over again, "Time is Money," and importantly, where do we do find the money to pay for the time?
Redefining the Hearing Aid Selection Procedure
The first thing we have to do, I believe, is change the way we think about the hearing aid dispensing process. We cant rediscover Camelot, the AR program that I experienced fifty years ago is gone. Like the original Camelot, it has faded in the mists of time; an idealistic dream of perfection that we know can never be recalled. Still, as much as I personally enjoyed and benefited from the program, I do think much of it was overkill. When all this began during WW II, there must have been a great deal of insecurity about what newly deafened servicemen needed. The decision must have been to give them everything, growing out of a concern that otherwise some vital element would be omitted.
We cant do "everything" nowadays; choices have to be made. I believe we can do a credible job within the present system if we incorporate some of the lessons from the past.
The most important of these lessons is that we must conceptualize the selection and dispensing of hearing aids within a larger framework. While it may sound like a clich, we do have to keep in mind that we are not working with a pair of ears but with the person to whom the ears are attached. We should view the hearing aid fitting as an opportunity to explore a number of hearing-related issues and to help the hearing-impaired person deal with them. We must, in brief, redefine the hearing aid selection process in a way that it routinely incorporates a multi-session group hearing aid orientation, or short-term AR, program (Ross, 1999). I hasten to point out that this is not an original concept by me; it has been recommended, written about, and practiced by many of our colleagues, many of whom are now attending this conference.
I do believe that such a program should not be optional, but simply be included as a routine component of the hearing aid dispensing process. For the same reason we would not think of fitting someone with a hearing aid unless a prior audiological evaluation was conducted, we should not fit hearing aids without an organized follow-up program. This is based on my assumption that the overwhelming majority of people acquiring hearing aids for the first time need the kind of services and information outlined above. By separating these services from the hearing aid itself, by referring only some of our hearing aid clients to an organized follow-up program, we send a message that only exceptional hearing aid users require and can benefit from such a program.
On the contrary, I believe we should send the opposite message, that a hearing aid, while certainly the centerpiece of the aural remediation effort, is only one of the tools used to reduce the communicative and handicap impact of hearing loss. What this implies is that the expenses of the short-term AR program be included in the cost of the hearing aids (Ross and Beck, 2001).
In summary, our current management model tends to minimize the total impact of hearing loss. Most people can use and benefit from the additional services a short-term aural rehabilitation program can provide. Such a program can be most efficiently and conveniently included in association with the acquisition of hearing aids. In this respect, the lessons from the past are very clear. If only we "listen" to them.
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Kochkin, S. & Rogin, C. (2000) Quantifying the obvious: The impact of hearing instruments on quality of life. The Hearing Review, 7(1), 6-35.
Ross, M. (1999) Redefining the hearing aid selection process. Aural Rehabilitation and its instrumentation, Special Interest Division #7, American Speech-Language Hearing Association, 7(1), 3-7.
Ross, M. & Beck, D. (2001).Expensive Hearing Aids: Investing in technology and the audiologists time, article in Audiology Online, www.audiologyonline.com April 26.
Stika, C. (l997a). Living with hearing loss--Focus group results: Part I: Family relationships and social interaction. Hearing Loss, 18(5) 22-28.
Stika, C. (l997b). Living with hearing lossFocus group results: Part II: Career developments and work experiences. Hearing Loss, 18(6), 29-32.
Stika, C. (2001). Results of a hearing aid services and satisfaction questionnaire, First International Aural Rehabilitation Conference, Portland, Maine.
Strom, K. E. (2001). An Industry in transformation: Technology & consolidation lead the field into a new millennium. The Hearing Review, 8(3), 28-44, 87.
This article is reprinted with permission from The Hearing Review and MWC/Allied Healthcare Group, Los Angeles, Sept 2001 (v. 8, no. 9), pgs. 62-67. All rights reserved.