A Multifaceted Living Well Approach to the Management of Hearing Loss With Adults and Their Frequent Communication Partners Often in the context of rehabilitation for adults with hearing loss, we hear the voices of cynics. “It costs too much. It takes too much time. People are not interested.” In this paper, we advocate for an alternative viewpoint of the process of rehabilitation, one that can be implemented for ... Article
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Article  |   May 01, 2012
A Multifaceted Living Well Approach to the Management of Hearing Loss With Adults and Their Frequent Communication Partners
Author Affiliations & Notes
  • Nicole Marrone
    Department of Speech, Language, and Hearing Sciences, University of Arizona, Tucson, AZ
  • Frances Harris
    James S. and Dyan Pignatelli/Unisource Clinical Chair in Audiologic Rehabilitation for Adults, Department of Speech, Language, and Hearing Sciences, University of Arizona, Tucson, AZ
Article Information
Hearing Disorders / Audiologic / Aural Rehabilitation / Professional Issues & Training / Articles
Article   |   May 01, 2012
A Multifaceted Living Well Approach to the Management of Hearing Loss With Adults and Their Frequent Communication Partners
SIG 7 Perspectives on Aural Rehabilitation and Its Instrumentation, May 2012, Vol. 19, 5-14. doi:10.1044/arii19.1.5
SIG 7 Perspectives on Aural Rehabilitation and Its Instrumentation, May 2012, Vol. 19, 5-14. doi:10.1044/arii19.1.5

Often in the context of rehabilitation for adults with hearing loss, we hear the voices of cynics. “It costs too much. It takes too much time. People are not interested.” In this paper, we advocate for an alternative viewpoint of the process of rehabilitation, one that can be implemented for low costs and has value within a community. We explain the process that occurred to secure, develop, and expand an endowed community-based program on Living Well with Hearing Loss based out of the University of Arizona with a vision of sustainability. Since its inception in 2009, the program has grown substantially. We describe the program’s early journey and underlying bases, outline preliminary outcomes, and provide suggestions for audiologists in clinical practice based on our experience to date.

Since Fall of 2009, The University of Arizona has cultivated rehabilitation theory into clinical practice on a large scale through an endowment. The Living Well with Hearing Loss (LWHL) program has grown and continues to evolve with the primary goal of improving the lives of adults with hearing loss and their frequent communication partners. The development and implementation of the program have provided us with experiences that confirm and yield insights into the needs of adults with hearing loss and their communication partners and that test effective management approaches. As part of a university, the program also has given us the opportunity to train the next generation of audiologists in evidence-based rehabilitation, reinforcing a person-centered approach not just in the classroom, but also through direct experiences. In this article, we describe a program that is explicitly designed to accomplish quality-of-life-focused goals and suggest specific methods that any audiologist can implement in the process of providing comprehensive care to adults and their frequent communication partners. Although these suggestions are based on our experiences thus far, the article is not intended as a “how to” for implementation, but rather a demonstration that the widespread needs of those with hearing loss cannot be ignored.
What Makes This Possible?
The LWHL program began with a gift. Jim and Dyan Pignatelli, Tucson residents, were interested in making a substantial financial contribution that would benefit people with hearing loss. They were familiar with the effects of hearing loss because of its affect on their own family. They explored basic science options such as hair cell regeneration and eventually came to the decision that changing the effects of hearing loss on people’s lives would be worth an investment. In partnership with the Unisource Corporation, Jim’s previous employer who wanted to honor him on his retirement, the University of Arizona established the James S. and Dyan Pignatelli Clinical Program and Chair in Audiologic Rehabilitation. This was a testimony that hearing loss has important life effects for adults and that comprehensive audiologic services directed towards improved communication interactions and better quality of life are valuable. Since its inception, the program has continued to accomplish its directive, “To help adults with hearing loss and their families cope with the effects of the impairment.” The program is growing to meet the needs of the diverse community that it serves through direct service provision and community partnerships with organizations and practitioners. The success of the program derives certainly from its financial base, but also can be attributed to the Clinical Faculty’s dedication to the approach, our commitment to build a solid evidence base and accomplish research objectives, the community’s involvement, and to the students who will sustain the efforts as they go into practice.
The Need for a Living Well With Hearing Loss Approach
As an adult, living with hearing loss is not necessarily easy, nor is it necessarily disabling. The life effects of changes in hearing are shaped by complex interactions between the individual, his or her relationships with others, the environment, and society (World Health Organization [WHO], 2001). One of the biggest challenges for adults living with hearing loss is maximizing communication and quality of life in the presence of barriers to functioning and participation. These barriers may take many forms, from impatient communication partners to fractured healthcare systems. Addressing these complex needs falls within the scope of practice of audiologists (American Speech-Language-Hearing Association [ASHA], 2001, 2004, 2006).
There is a growing need for audiologic care that specifically addresses the life effects of hearing loss in adults. Hearing loss is a leading chronic health condition in America (Agrawal, Platz, & Niparko, 2008; Lin, Niparko, & Ferrucci, 2011) and around the world (Danermark et al., 2010; Mathers, Smith, & Concha, 2000; Mitchell et al., 2011). Numerous studies have confirmed that when left untreated or poorly managed, hearing loss can adversely affect quality of life not only for the person, but also for family members and communication partners (Boi et al., 2011; Chia et al., 2007; Chisolm et al., 2007; Dalton et al., 2003; Helvik, Jacobsen, & Hallberg, 2006; Mulrow et al., 1990; National Council on Aging, 2000). Nonetheless, a pervasive and documented theme in the profession is a lack of direct rehabilitation services in the private practice sector (for most recent data, see Kochkin, 2011). As a consequence, some of a patient’s important needs can go unmet even with the provision of amplification. In effect, this leads to the impression that the professional’s bottom line is derived solely as a function of billable units rather than best practice or consideration of the bigger picture. The challenge for the audiologist is a difficult one, given that hearing loss continues to affect communication and participation even with the use of amplification or hearing assistive technology (Harkins & Tucker, 2007; Noble & Gatehouse, 2006). Thus, a comprehensive treatment approach is needed with adults (Valente et al., 2006) to address not just reduced hearing, but also the effects on patients’ lives (English, 2008). The terms comprehensive, biopsychosocial, and holistic often are used interchangeably in the context of audiology and other domains of health care to refer to an approach that addresses all aspects of the biological, psychological, and social needs of an individual as a whole.
The LWHL team developed the program to meet the unmet needs of adults with hearing loss in the Tucson, Arizona community that were estimated to exist based on this past research and on estimates drawn from population demographics. We calculated a conservative estimate of the number of adults who may be living with hearing loss in our community. The population from the most recent census data for Pima County is 980,263 (U.S. Census Bureau, 2010) and 77 % are older than 18. Based on an estimated national prevalence of hearing loss of 17% of the population (Pleis & Lethbridge-Çejku, 2006), an estimated 125,000 adults older than 18 are living with hearing loss in our community. Prior to LWHL, there was not a large-scale community-based program for audiologic rehabilitation services in our community. The number of participants in our program to date has proven our population prediction accurate. Participants have come into the program through referrals from the department’s audiology clinic, referrals from hearing health care professionals in our community, phone call inquiries following a human-interest feature story on the program in the newspaper, and word-of-mouth. During the first 2 years of the program, we served 392 participants in the on-campus group sessions and have had over 500 attendees at our outreach lectures.
Components of the Living Well Program
The Living Well with Hearing Loss Program at the University of Arizona is multifaceted to achieve its overall objective while reflecting the diverse needs and possibilities of persons with hearing loss in the Tucson community and our mission of training the next generation of audiologists. These components fall into six categories of services.
  1. On-campus implementation within individual clinic appointments

  2. On-campus education, support groups, and classes

  3. Training future professionals

  4. Community education, support groups, and classes

  5. Community outreach and information in collaboration with other organizations, agencies, and hearing health care service providers

  6. Maintenance of a comprehensive database of demographics and outcomes for research purposes

For further discussion in this paper, we will focus on describing the on-campus services and training opportunities.
On campus, clinicians implement the LWHL approach immediately through an introductory letter inviting communication partners to the appointment. The illustration in Figure 1 is the keystone of the program for individuals and appears on all of its materials, solidifying the program’s identity as an integration of technology into a holistic approach. These components are individualized for the person with hearing loss and their communication partners on the basis of capabilities and needs assessment. During the appointment, all of the Audiologists implement a holistic approach and there are LWHL resources and materials that may be used to meet each client’s needs. Some of these are communication materials and brochures, a diary, hearing aid expectations handout, and self-assessment and goal-setting tools to facilitate appointments.
Figure 1.

The Central Components of the On-Campus Education and Clinical Program on Living Well with Hearing Loss at the University of Arizona.

 The Central Components of the On-Campus Education and Clinical Program on Living Well with Hearing Loss at the University of Arizona.
Figure 1.

The Central Components of the On-Campus Education and Clinical Program on Living Well with Hearing Loss at the University of Arizona.

×
The current model for the Living Well with Hearing Loss groups is a 3-week program, each session 2 hours long meeting once per week, with approximately 12 people attending. We settled on this duration after implementing first a 5-week, then a 2-week model. Both were successful; however, the course evaluations of both were essentially the same. Based on our experience, we found that 2 weeks was not quite long enough to begin the process of changing behavior patterns, but that 3 weeks could meet the requirements and allow us to see more clients. The content of the group sessions is similar to many other group audiologic rehabilitation programs with a combination of educational and psychosocial components (Boothroyd, 2007; Tye-Murray, 2009). This is a fee-for-service program, with scholarships offered for those who cannot afford the fee.
Thematically, the program has a strong community focus for those who are unable or unwilling to come to campus. This includes components in assisted living facilities and in community centers, both in English and Spanish. Students in the Doctor of Audiology Program developed and implemented these particular programs, which are in their infancy and continue to evolve. The program also fosters initiatives for special cohorts, such as a peer-driven group for those in the 18 to 35 demographic. This group meets casually and sponsors events such as a “Turn Down the Volume” campaign on the University of Arizona campus. Development of this facet of the program has led to a greater understanding of the specific needs of this demographic group and what constitutes living well at this age of life.
Underlying Bases for Individuals and Groups
The LWHL program is designed around the framework of the International Classification of Functioning, Disability and Health (WHO, 2001). In the broadest sense, the approach targets what is meant by “living well” with hearing loss as positive functioning and participation. The focus is therefore not on hearing impairment or even its treatment per se; rather, the emphasis is placed on maximizing communication and minimizing any negative effects of changes in hearing on activities and participation, as defined by each individual. This approach may help to counter stigmatizing social perceptions of hearing loss, such as viewing it as a disability that should be hidden or treated (Hétu, 1996; Hogan, Reynolds, & O’Brien, 2011; Lane, 1999).
All aspects of the LWHL program at the University of Arizona are centered on the well-being of persons with hearing loss and their frequent communication partners. How is well-being defined? Well-being is a dynamic construct with multiple facets. From a theory-perspective, the definition of well-being is an area of ongoing exploration in psychology and public health. For example, Ryff and Keyes (1995)  outlined six theory-guided dimensions of well-being, including self-acceptance, positive relations with others, a sense of autonomy in thought and action, the ability to manage complex environments to suit personal needs and values, the pursuit of meaningful goals and a sense of purpose in life, and continued growth and development as a person. From the perspective of implementing a program focused on well-being for adults with hearing loss, it is important to recognize that hearing loss affects each of these multiple dimensions of general well-being in an individualized way (Garstecki & Erler, 2001). Therefore, program development for LWHL has focused on cultivating services to improve well-being that are adaptable to the individual needs of its clients and service providers.
The programmatic development of LWHL is focused on changing the perception of the rehabilitation process from one of solving the hearing loss to one of resolving functioning and participation restrictions (see also, Gagné, Jennings, & Southall, 2009). The focus on well-being necessarily involves the person in the process of identifying the goals of rehabilitation. Both implicitly and explicitly, this is key to the shared decision-making process at the heart of person-centered care (English, 2008). Targeting well-being means that LWHL prioritizes the everyday activities and relationships of specific importance to the person with hearing loss and their frequent communication partners. An essential aspect of capturing the personal meaning of an activity limitation or participation restriction is to consider the person’s perspective (Erdman, 2009). Although some components of the LWHL program are structured, they are structured in a way that allows the person to choose the rehabilitation process that will fit within their own life. Finally, LWHL includes frequent communication partners. Involving communication partners in the rehabilitation process expands the locus of rehabilitation and facilitates positive relationships (Preminger, 2003; Scarinci, Hickson, & Worrall, 2011).
Training Future Professionals
As professionals, it is up to all of us to prepare the future generation of audiologists, and it is a primary responsibility in a university training program. Our training mission is well facilitated by the LWHL program. In individual clinic appointments, students are exposed to a person-centered approach and become familiar with its implementation. All first-semester Doctor of Audiology students must participate in LWHL groups. This experiential learning compliments the material that they receive in class. They become well-grounded in a patient-centered philosophy and its rationale. Through direct interaction, they are able to experience the frustrations and successes of clients and their families, this strengthens their counseling skills as they progress through their graduate program. Just as with the clients who attend groups, for many students, this becomes a life-changing event, and for most, it is their first clinical opportunity. For the remainder of their program, each student must facilitate groups so that they learn the skills and realize that implementing groups is fun and exciting, rather than intimidating. Although the program has not existed long enough to collect data on these students postgraduation, this is a future goal.
Summary Experiences From the Development of LWHL
Providing quality, holistic hearing healthcare is a professional obligation for an audiologist, and any practitioner can make a switch to a patient-centered, holistic philosophy at little to no cost. We present a few observations from our 2 years of experience with a defined holistic approach follow. These observations may assist others who have an interest in changing their approach but do not think they are prepared to attempt it.
Value-Added Does Not Mean Add-On
Our Living Well with Hearing Loss perspective was based upon the recommendation by Sweetow and colleagues (2010) and others (e.g., Wayner & Abrahamson, 2003) that such an approach should not be viewed as an add-on. We oriented patients to the approach in an introductory letter framing the philosophy and encouraging them to bring a frequent communication partner to the appointment. We included the Self-Assessment of Communication (Schow & Nerbonne, 2007) in the letter, and the partner completed a comparable scale on the day of the appointment. Our new patients have responded positively to even these small changes. They comment that they feel as though finally someone understands what they are experiencing. The cost to our practice is minimal, the benefit maximal. Considering the activity limitations and participation restrictions of every patient requires a minimal investment that yields maximal benefit.
If You Build it, People Will Come
After a feature story in a local newspaper on the LWHL program, we received more than 200 phone calls from individuals looking for knowledge and assistance related to their hearing loss. From a community with 65 licensed dispensing audiologists and hearing aid dispensers, this is a strong response. To address this need, the LWHL program ran nine 2-week groups, each session was 2 hours long with 20–25 participants (including communication partners) in each group. Approximately 50% of attendees had received some form of hearing health care, primarily through the purchase of hearing aids, and continued to struggle. Through these classes, they learned enough about hearing loss and its management to become informed consumers. Many returned to community providers for initiation or improvement of care or became patients in our University of Arizona Hearing Clinic. Although this situation may not always be possible for someone in a private business, these specialists could use public bulletin boards or inserts in local publications aimed at improving communication rather than direct marketing about devices, which can intimidate, confuse, and often discourage many consumers who may feel vulnerable and targeted.
In Fall of 2009, LWHL also sponsored the first of a community lecture series, some of which was facilitated along with the local self-help and support group for adults (Adult Loss of Hearing Association). Approximately 500 people have attended the eight workshops thus far, they rated the information that they received as being excellent and very beneficial. Although we did not track follow-up explicitly with those attending, approximately 5% sought help in our clinic following the presentation. Having an informational seminar gives back to the community, raises the profile of the practice, and assists consumers. Holding a session once or twice per year, even if you have to rent space, can heighten the profile of a practice, attract new patients, and give those in the community accurate information about hearing loss management rather than hearing aid sales.
We do not track hits on the LWHL website, but the site is a central source of information about all events related to hearing, both locally and nationally. A clinician can easily add a section on LWHL to their website, with links to a variety of sources. Clinicians can post a downloadable list of Tips, Hints, and Tricks for Better Communication for their own patients or others seeking information.
Even clinicians with minimal experience may find facilitating groups to be fun and not as difficult as they might anticipate. Putting people with common issues together in a room is the fulcrum for success. We received positive feedback from the 2-, 3-, and 5-week sessions, this did not vary as a function of duration. Participants have expectations, and the sessions will provide education and information, but the experts in the room will be providing and receiving the most benefit through interactions with each other (see also Bally, 2009).
A small investment and even minimal community involvement goes a long way. Although, as a university, people may view us differently from a private practice, we are not the only practice in our community, and any audiologist can become more involved. After all, not all communities have universities with audiology training programs. Any practitioner can help out in a number of ways. Experts can volunteer to be a speaker for local support organizations or service groups such as Rotary, Lions or Sertoma. They can present an informational talk at a local library. One of our local audiologists started a radio program. People are thirsty for professional information as they try to wade through a convoluted and confusing system of hearing healthcare delivery. Clinicians who present information in a nonbiased way engender trust that ultimately sustains a practice.
Turning Down the Volume of Device-Driven Messages
By Fall of 2011, nearly 400 people had attended our 2, 3, or 5-week groups. Individuals decided to participate in the group for several reasons. Some attended after purchasing hearing aids elsewhere who were disgruntled. These individuals generally reported that they were dissatisfied with the insufficient time clinicians spent with them either during the selection or the follow-up phase of their care. Too often, we heard people complaining “They just wanted to sell me hearing aids.” At a national level, Marke Trak VIII data supports these observations (Kochkin et al., 2010). As professionals, we realize that there can be a disconnect between what a patient may perceive and what we think we are providing. Even so, when we have had the opportunity to follow up with some of these patients, we find a lack of hearing aid verification that has resulted in inaccurate programming, a lack of information provided on telephones and assistive technologies, and no concern for the activity limitations and participation restrictions imposed by the hearing loss. Alternatively, there are individuals who joined the group on the referral of their hearing healthcare providers. Their practitioners may not want to provide additional services themselves, but are conscientious about patient care and, therefore, refer to the LWHL program. Working together with their service providers, patients are able to communicate their needs better, thus enhancing the professional relationship and experience.
One of the biggest deterrents to patient referral by local practitioners is fear that our clinic will take over patient care. Given our training mission, this would not be a viable or sustainable outcome. As facilitators, we encourage all participants to seek a professional with whom they are comfortable and can work well. We view this as part of the community partnership, but the implication is that quality care will be provided. If a participant chooses to pursue audiologic care elsewhere, in all likelihood there are reasons for that decision that are independent of participation in the LWHL group. This typically occurs if the individual perceives that he or she has received poor care. People who have a good working relationship with their audiologist do not fall in that category, they often are pleased and happy to talk about their experiences with their audiologists, which can encourage others in their group to see that audiologist for future services.
Being an advocate in a supportive relationship with your patients, rather than in an adversarial and combative one, benefits those patients, your practice, the community, and the profession. Participants view the LWHL program as a safety zone where they are not bombarded with a device-driven approach. The individual has the right to choose where to seek their hearing care.
Adapt and Carry On
People have different personalities, needs, and lifestyles. They may not want to or be able to attend a group, even if it is provided at no cost (i.e., bundled in with their purchase of hearing aids and service). Our role as audiologists is to provide the opportunities, make people aware of the benefits, and not force people to participate in a group. There are many times in our clinics when we provide information without realizing the long-term consequences. Patients may decline joining a group only to join later when they are ready, or to refer their neighbors or friends. We provide all of our patients with two common forms of information, Maximizing Communication, a brochure that provides helpful hints for speakers and listeners along with links to helpful websites and organizations and a DVD presentation for communication partners in our “While you wait” period. This captioned DVD, How to Communicate Effectively with Someone Who Has Hearing Loss, originally designed for caregivers, explains hearing loss and provides helpful hints on how to improve communication (for more information, go to http://www.medifecta.com). Communication partners also complete the Self-Assessment of Communication–Significant Other version (Schow & Nerbonne, 2007) so that they can express for themselves how they view their partner’s hearing loss. Individual appointments are goal-centered and consider activity limitations and participation restrictions along with impairment.
When patients receive common sense information from a professional, rather than a family member, the view the information, and the professional, as more important. One of the most memorable suggestions in our groups is to “Walk before you talk,” or to be in the same room with your communication partner. This is not new information for a communication dyad, but people often allow emotion, rather than solution, to dominate their decisions and continue to use old habits that don’t work. When a professional clearly and definitively states, “Don’t do that any more, it doesn’t work and will only make everyone frustrated,” that professional provides validation for something the pair likely already realizes, and they will be grateful and comply more readily. Of course, in a group environment, they hear the frustrations experienced by others and the message becomes much more effective. More examples can be found at the Ida Institute web site (http://idainstitute.com/).
Summary
Overall, what we have learned from running a comprehensive program is that there are many unmet needs in our community. We cannot overcome this situation alone, but by providing and growing the model and increasing community awareness, we can include and encourage other practices in the community to become involved and, more importantly, train future audiologists to implement change when they begin practicing. Audiologists who offer a holistic approach will build a sustainable practice with a solid base that will expand primarily because of word-of-mouth referrals. Over time, the approach and its implementation pays dividends, not only in an enhanced sense of professional self-worth, but also on the bottom line in addressing life effects for people with hearing problems.
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Figure 1.

The Central Components of the On-Campus Education and Clinical Program on Living Well with Hearing Loss at the University of Arizona.

 The Central Components of the On-Campus Education and Clinical Program on Living Well with Hearing Loss at the University of Arizona.
Figure 1.

The Central Components of the On-Campus Education and Clinical Program on Living Well with Hearing Loss at the University of Arizona.

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