In our society today, there seems to be a local, national or virtual support group for every conceivable problem or condition. Considering their ubiquity and popularity, that they fill an important need for many people can hardly be doubted. As different as the problems on which they focus may be, they all share the same rationale: someone who has "been there" can offer credible insights and encouragement for people with similar problems who are seeking help. While this in no way precludes the crucial role of professionals in a specific area, for many people with problems their assistance, while necessary, is often insufficient. Simply said, people often need and seek the kind of help that can best be provided by their peers.
In the audiology profession, in addition to such support groups as SHHH, we are suggesting that trained peer mentors be the ones to provide this help. The advantages of peer involvement are similar to those that characterizes a support group; because the mentor shares a similar problem or interest as the client, he or she is seen as a credible source from which to receive help. In this paper, we will discuss the justification, function and curriculum of a peer mentoring training program newly developed by the Rehabilitation Engineering Research Center (RERC) for Hearing Enhancement at Gallaudet University.
Our Current Service Delivery Model
The goal of an audiologist is to provide his or her client with the most appropriate aural rehabilitation services designed to ameliorate the impact of a hearing loss. Among other services, these would ordinarily include information about the likely communication effects of the client's specific hearing loss, instruction and encouragement in the use of the selected hearing aids, general hints about coping strategies, information about other types of hearing devices available, several follow-up appointments, counseling the "significant others" and the sincere admonition to "call if there is any problem." Most audiologists also give their clients written material to buttress the information and services delivered personally. Given the service delivery model followed by most audiologists, this is about all that can be done economically within the time constraints of the usual hearing aid selection process.
Still, we all know people for whom this is simply inadequate, with needs that transcend what can be provided via this model. One has only to attend an SHHH meeting and listen to the participants to realize that the usual service delivery model has not met their hearing-related needs. We all know of people who have not come to terms with their own hearing losses and who require additional support, information and counseling. Even though they may wear hearing aids, they may not be aware of the availability of certain hearing aid features, such as telecoils and directional microphones, or the existence of other hearing assistive technologies. While many complaints that hearing aid users make relate to problems that can be rectified with additional programming or a remake, many people are hesitant to return to their audiologist to get these problems rectified (in spite of being assured that such repeat visits would be welcome). Some of their other complaints or problems, however, may not be so clear-cut and really reflect their need to have a sympathetic and available "ear" into which they can pour their frustrations, anxieties and experiences. As any audiologist can testify, such "hand-holding" - often necessary and sometimes crucial - can be a very time consuming practice. In brief, it is apparent that for many hard of hearing individuals, a hearing aid alone is not enough.
There would be less necessity for the involvement of a peer mentor if clients retained the information provided them by their health care provider, but they don't. Margolis (2004) reviews the relevant literature on exactly how much information is retained, and retained correctly, by patients being counseled by their health-services professionals. It turns out that people do not recall about 50% of the facts provided to them immediately after leaving the professional's office. For example, just about every audiologist will explain a client's audiogram and its significance for the person's communicative functioning before he or she leaves the office. And time and again we see people who have no idea of what their own audiogram looks like, much less an understanding of its implications. This is such a familiar and apparently simple concept to the audiologist that it is easy to underestimate its difficulty for a client and to overestimate how much is actually retained and understood. Moreover, Margolis (2004) also notes that of the information that is apparently remembered, fully 50% of that is recalled incorrectly in some way. He points out that repetition, particularly under less stressful conditions than in a health provider's office, would increase retention of the information.
Supporting Margolis' observation are the juxtaposed results of two studies. What these demonstrate is the discontinuity between the provision of information on the one hand, and its retention by clients on the other. In the first study, by Prendergast & Kelley (2002), 110 dispensing audiologist were surveyed regarding Aural Rehabilitation related services they provided their clients. In another study (Stika, Ross & Ceuvas 2002), 942 hearing aid users responded to a survey that asked them what services or information they recalled receiving from their hearing aid dispenser. There turns out to be a large disparity between what services the professionals offered and what the clients recall. For example, Prendergast & Kelley (2002) report that 84% of the professionals indicated that they provided their clients with information about assistive listening devices. In the Stika, Ross & Ceuvas (2002) study, only 30% of the respondents reported recalling receiving such information from the hearing aid dispenser. The same order of difference is found in other categories that are similar in the two studies, such as advice about communication and coping strategies (83% versus 13%). These differences are particularly noteworthy, since it encompasses much of what we would define as "aural rehabilitation."
It is apparent that the conclusions discussed in the Margolis paper account for the differences between what was presumably offered and what was actually being recalled. This should not be surprising. During the hearing aid selection process, the recipients are being inundated with new information and experiences - about their audiograms, their hearing aids, strategies to maximize communicative efficiency, etc. It's all new to them and it is simply not realistic to expect that people will be able to recall all of this correctly. While different nomenclatures used in the various studies for the various services may account for some of this difference, the inescapable fact remains that people are simply not "getting it" or don't "have it" when they leave the audiologist's office.
Important information (and all of it is important or it shouldn't be offered) has to be repeated, reviewed, and then verified in order to ensure that it has been absorbed. Once hearing aids are in place and operating correctly, subsequent communication breakdown and auditory experiences have to be analyzed. Acceptance issues have to be worked through. This all takes time, time that is not available in the average audiological practice. But even if additional time were available, there are some areas of need in which the effectiveness of the professionals is limited.
Meanwhile, consumers are joining organizations such as SHHH and ALDA (the Association for Late-Deafened Adults) to get the help they need. Members of these consumer organizations are readily forthcoming with information for new members, but they usually base their information and advice on their own personal experiences. However, their information base is limited and may contain inaccuracies that can be problematic. For example, a particular hearing aid may be recommended because "it really helps me a lot", even though it may not be appropriate for the peer who is being advised. In short, there is a need for a knowledgeable peer, one with a broad knowledge base of communication strategies and current technology to help guide peers to make decisions for themselves and work more interactively with their audiologists.
The Peer Mentor
Rationale and Roles
Reviewing and reinforcing the information provided by an audiologist is only one of the areas in which a Peer Mentor can be helpful. Peer mentors are a common presence in the allied health professions and in education. They can be found in management programs for the blind, drug and alcohol addiction, cancer, smoking control, stroke patients, disease prevention, eating disorders, and in many other health-related areas. Large peer mentoring programs exist in many educational settings. The National Institute on Handicapped Research (NIHR) perhaps said it best in l984 when they stated:
Peer support work is based on recognition that peers could understand feelings and personal issues concerning disabilities better than non-disabled professionals. Certain areas of services were pinpointed as pertinent to peer involvement; these areas include information and referral, skills training, emotional support, self-exploration, problem identification, goal setting, action planning, and goal attainment monitoring.
The role of a peer mentor can be viewed as an extension of the activities undertaken by the dispensing audiologist. As the NIHR statement indicates, peer mentors are an additional credible resource that audiologists can deploy on behalf of their clients, in much the same way that support personnel in audiology can now be utilized (ASHA position statement & guidelines, l997). The peer mentors would be expected to work in collaboration with and under the supervision of credentialed audiologists. They would be available to provide support to peers and to help them foster a proactive and problem solving mind set (encouraged to be more assertive, to practice communication repair strategies, etc.). In concert with the audiologist, they can determine need for various assistive devices and help the person acquire and use them appropriately (such as personal ALD's, wake-up alarms, suitable smoke and carbon monoxide detectors and TV listening devices). They can work with a client's family to help them understand the realistic auditory limitations of their loved one, conduct communication strategy training, and encourage repeat visits by the clients to their audiologists. Above all, perhaps, they can be knowledgeable and sympathetic listeners to the many problems and issues that arise when one is attempting to "live with a hearing loss".
The Peer Mentor training program
Gallaudet University has developed a pilot peer mentoring training program. Candidates for the Gallaudet peer mentoring program must have (1) a hearing loss, (2) a college degree, (3) demonstrated interest in the peer mentoring (4) and a record of activist activities on behalf of hard of hearing people. Selection then involved a competitive application process. Twelve applicants were chosen for the beginning class and attended the two-day opening seminar. The training program will begin June of each year at Gallaudet University - as it did this year - with a two-day opening seminar followed by a two-year on-line program of five graduate credit courses, and conclude with a week-long seminar at Gallaudet University. Upon successful completion of the program, each graduate will receive a Professional Studies and Training (PST) certificate.
The five on-line courses are titled:
- Hearing Loss in America: An Overview
- Biopsychosocial Aspects of Hearing loss
- Practical Audiology: Fundamentals for Consumers
- Hearing Assistive Technology
- Peer Mentoring for Hearing Loss
The program emphasizes both academic and experiential learning. This will include reading assignments, essays, surveys, interviews, role play, group discussion with professional moderators, development of mentoring models and plans, accumulation of current professional and consumer resources, and hands-on experience. As a group they are encouraged to develop a support network to help one another in their work.
Peer mentoring is a new concept for the field of audiology, but one which has great potential to meet both professional and consumer needs. Many of the details of the actual applications will have to evolve as we gain more experience. Certain boundaries, however, are clear and have already been communicated to the trainees of the first training program. Every mentor will be expected to work under the direct or indirect supervision of an audiologist. They understand that they will be working in a supportive capacity to one or more audiologists, perhaps on a contractual basis or directly for an audiologist or audiological practice.
The peer mentors will establish a supervisory relationship with a certified audiologist prior to the second course in the program, with assistance from the program coordinators as needed. Although this connection does not presume that the affiliation will become a permanent relationship, it will ensure professional supervision to the trainees. As they complete their training program, the peer mentors will contact other local audiologists to make their availability known or create a more permanent relationship with their supervisors. Every audiologist has clients who require more services and time than they can economically provide. Some individuals require additional time for help in adjusting to and managing their hearing aids. Others require a more adaptive problem-solving approach in order to deal with the various communicative-related problems they experience. Indeed, the list of unresolved issues and needs is almost endless.
There are several ways that peer mentors can operate. They can keep their "day-job" and simply make themselves available to cooperating audiologists for help with clients who requires more and/different assistance than they can give. Other mentors may elect to devote more, or even full time, to mentoring activities. As indicated above, these can include helping clients adjust to their hearing loss and/or hearing aids, learning about communication strategies, assertiveness training and encouragement, providing information about local resources and the potential value of other hearing assistive technologies (HAT). Some people may require a home visit to ensure proper placement and use of hearing assistive devices. This activity may include help with the installation of TV listening systems, and assessing the need for specific signaling and warning devices as well as the appropriateness of the alerting signals in a smoke detector. Mentors would be expected to help identify options for the most effective visual display (i.e. TDD's) or sound enhancement telephone system for them. Mentors would also be engaged in their community on behalf of hard of hearing people, perhaps by serving on local advisory committees or by giving presentations about hearing loss and HAT to various community organizations. In other words, serving hard of hearing people as a kind of ombudsman. When questions or issues arise that can best be managed by a professional, they would be trained and expected to make the appropriate referral.
What has not yet been worked out is remuneration for these activities. Some mentors may elect to engage in them as a community service; others would expect (or, at least, hope) that their efforts can be rewarded in a monetary way. These are matters that can best be worked out on an individual basis, perhaps by a formal consultantship basis or by actually being an employee of an audiologist or group of audiologists. Our preference right now is for the peer to remain and to be seen as an independent resource, not as an extension of any specific professional. We believe that this status will enhance their credibility for clients, but this is a matter that will simply have to work its way out.
In summary, we believe that the time has come for the audiology profession to adopt and encourage the formal role of peer mentors to assist in the care of, at least, some of its clients. We believe that the usual hearing aid delivery model, which is about the only type of aural rehabilitation assistance that the overwhelming number of clients receive, can be enhanced and improved with the involvement of a peer mentor.
ASHA (1997) Support Personnel in Audiology: Position Statement and Guidelines, ASHA 2002 Desk Reference, Volume 2, Audiology
Margolis, Robert H. (2004). Page Ten: What do your patients remember? The Hearing Journal, 57:6, 10-17
NIHR(1984) as quoted in Sesula, Debbie (2000) South Fraser Peer Support Research Project Report
Prendergast, Susan G., & Kelley, Lori, A. (2002). Aural rehab services: Survey reports who offers which ones and how often. The Hearing Journal, 55:9, 30-35
Stika, Carren J. Ross, Mark & Ceuvas, Carlos (2002). Hearing aid services and satisfaction: The consumer viewpoint. Hearing Loss, 23:3, 25-31