Regaining Control of Your Life through Self-help Groups

Brenda Battat, MS, Executive Director
Hearing Loss Association of America, Bethesda, MD

“I wish someone had told me about the value of self-help groups such as the Hearing Loss Association of America (HLAA) years ago. It would have saved me so much stress in coping with my hearing loss." This is a refrain we hear from people with hearing loss over and over again.

Most people who purchase hearing aids are not aware when purchasing hearing aids they may need counseling, aural education, supplemental technology, help in everyday issues such as choosing a correct cell phone and peer support to optimize success with their hearing aids.  In this article we will explore the value of self-help groups.

Complementary Counseling

People with hearing loss need to be evaluated from the broadest perspective—beyond diagnosis, hearing testing and hearing aid evaluation—to see what their functional needs are. Given that audiologists and hearing instrument specialists are likely to be the first professional assessing the individual with hearing loss, they are in a perfect position to do full-scale needs assessment and make referrals to a local self-help group when necessary.  Not all hearing health professionals conduct extensive aural rehabilitation or education classes with their clients.  So it is very appropriate for hearing health professionals to inform their clients about organizations such as HLAA because many people need the complementary counseling effect that a support group provides.

Most hearing loss is for life and likely to get progressively worse. It can't be cured; it has to be diagnosed and managed by professionals and coped with by the individual who has the hearing loss. In that sense hearing loss is like other medical conditions without a cure¬ - the coping falls to the individual. When we walk out of the audiologist's office with our hearing aid, the door closes and we are faced with the reality of a big, insensitive world. We've been tested, evaluated and fitted with a state-of-the-art electronic device that certainly makes it easier to communicate; but we still have a hearing loss. We've learned how to care for the hearing aid and given it a good test run during the trial period, but the bottom line is there are still going to be situations where we cannot hear well. That means dealing on a daily basis with the stigma, embarrassment and frustration that goes with a hidden disability.

Hearing loss, even with the best-fitting hearing aid, impacts every interaction of our lives—relationships, work, education, intimacy. It also impacts our interaction with ourselves, undermining self-confidence, self-esteem, and mental and physical well-being.

So how does participating in a self-help group help someone cope? People who are hard of hearing are mainstream. They do not have a separate culture and language like people who are deaf and use sign language to communicate. They may not know another single person with hearing loss. They can feel alone and may retreat from social interactions due to their embarrassment about having difficulty communicating.

HLAA local chapters were formed thirty years ago on the basis of self-help. By giving people information about hearing loss, they are better able to cope with it and regain control of their lives.

Research has shown the benefits of people getting together to share common experiences. For example, according to the Agency for Healthcare Research and Quality (AHRQ), a study of breast cancer survivors revealed that the women who participated in a support group lived longer and had a better quality of life than those who didn't. Women in the support group learned coping skills and shared their feelings with others in the same situation.

Learning and Sharing

At a chapter of HLAA, individuals with diagnosed hearing loss will meet other people with hearing loss at different stages of personal adjustment. These become role models, confidantes, motivators and, sometimes, literally saviors. Individuals coming to a chapter meeting experience--most likely for the first time--an environment that is hearing friendly. Chapters set up assistive listening devices (ALDs), usually hearing loops because they are easy to install, portable and not too costly. New members will learn, often for the first time, the value of a telecoil that turns their hearing aid into a wireless receiver. They are amazed how much easier it is to listen through the hearing loop system. Some chapters have captioning to ensure everyone can participate fully, including those who cannot use ALDs.

Monthly educational programs arranged by the chapter provide information on the latest assistive technology, coping strategies, communication skills, research and other topics. These are inter-spersed with social events where people can put into practice in real life situations the communication strategies that they learn.

Gradually, new members see they have legal rights to access. They learn about legislation that can impact their lives and resources in their state and community, such as the state relay service, vocational rehabilitation, speech reading classes, state agencies serving people with disabilities, and equipment distribution programs. In addition, they learn many of these agencies must have consumers on their advisory boards, so they begin to get involved in formulating public policy.

Getting Involved

Ask you hearing health professional about local support groups. They may be held in senior community centers, churches or synagogues near you. The largest network in the U.S. is the 200+ chapters of the Hearing loss Association of America

Through involvement in various chapter committees, individuals develop leadership skills that help them regain self-confidence. As they get back a sense of control, they start to feel worthy and whole again. They then can put this new-found confidence to work in advocating for implementation of laws in their community and nationally.

They also learn the most important strategy of all—telling people they have a hearing loss and asking for help communicating. It's very common to deny hearing loss. Often a family member or friend encourages an individual to seek help. Many valuable years of using a hearing aid and learning vital coping skills are wasted as people continue to reject the notion that they are losing their hearing. In a group of people where everyone has hearing loss, it is OK to say it and to do something about it publicly.

Are self-help groups right for all people with hearing loss? Probably not. Some people don't like groups of any kind but will benefit from joining HLAA and receiving the bimonthly magazine Hearing Loss, the online eNews, the website, online chats and the annual convention. There are many options and ways to get involved apart from going to a chapter meeting.  Other benefits of belonging to HLAA are that people become informed consumers and smart hearing aid users. They will come back to the audiologist or hearing instrument specialist more often to try the latest technology because they will hear about it through involvement in HLAA.

In a recent survey seventy-five percent of our members indicated they had made a hearing aid purchase within the past three years. Nearly half said they used ALDs such as FM, loop, infrared or hard-wired systems; and 61 percent indicated they used assistive listening systems and telephones with a telecoil in their hearing aid.

HLAA members may enlist you as a professional advisor to the chapter to suggest speakers, keep members abreast of developments in the field of audiology, contribute articles to their newsletter, and get involved in communication access projects in the community. All this is good for your business and reputation.

Currently, there are 200 HLAA chapters nationwide. They meet once a month in the evening. Some also have daytime meetings to accommodate those who do not like to drive at night. Chapter locations are posted on the HLAA website at www.hearingloss.org.

Twelve Reasons Why Self-help Groups are Good for You

In ending let me inspire you with 12 reasons why you should attend a self-help or peer-support group for people with hearing loss. Self-help groups:

• Provide a community of people with hearing loss who understand and are empathic to your unique problems
• Help you deal with the issues of hearing loss stigma
• Will help you understand your legal rights as a person with a hearing disability
• Will teach you coping and communication strategies
• Will help you to adjust and communicate your needs in a "hearing" workplace
• Will share technologies beyond your hearing aids that will enhance your ability to function in the world
• Will educate you on technologies and strategies for ensuring your safety
• Will show you how to stay tuned into family conversations
• Will suggest strategies for communicating in noisy situations
• Will show you how to accommodate your hearing loss while traveling
• Will empower you through exchange of knowledge, encouragement and the sharing of experiences
• Will alleviate the despair and isolation of hearing loss through their support

The Influence of Cardiovascular Health on Peripheral and Central Auditory Function in Adults: A Research Review

Raymond H. Hull and Stacy R. Kerschen

Wichita State University, Wichita, KS

Contact author: Raymond H. Hull, Wichita State University, Department of Communicative Disorders and Sciences, Wichita, KS 67260-0075. E-mail: ray.hull@wichita.edu.

Purpose: This article provides a comparative review of research that has been conducted over the past 60+ years on the influence of cardiovascular health on the function of the peripheral and central auditory systems, and findings on the influence of improvements in cardiovascular health on those same systems.

Method: Research spanning the past 6 decades reviewed for this article has both hypothesized and confirmed the cardiovascular system's effects on the peripheral and central auditory systems. A review of the influence of the cardiovascular system is presented in this article, and a potential new avenue for auditory rehabilitation is postulated. The review presented in this article does not represent all studies conducted in the topic area but does provide an in-depth look into this fascinating area of research.

Conclusions: The negative influence of impaired cardiovascular health on both the peripheral and central auditory system and the potential positive influence of improved cardiovascular health on these same systems have been found through a sizable body of research that has been conducted over more than 6 decades. The most significantpositive relationship between improved cardiovascular health and improvements in those auditory systems has been found among older adults. If that relationship continues to be confirmed, then a potential new avenue for auditory rehabilitation on behalf of adults who possess impaired auditory function may be discovered.

National Wear Red Day

In the hearing health community, we’ve long recognized the link between heart disease and hearing health. So for the first time this year, the Better Hearing Institute (BHI) is joining with the National Heart Lung and Blood Institute (NHLBI) and the American Heart Association (AHA) to promote American Heart Month in February and to celebrate National Wear Red Day®—the first Friday in February when Americans nationwide wear red to show their support for women's heart disease awareness. This year, National Wear Red Day®is being observed on February 4, 2011.

It is extremely important for the hearing health community to encourage awareness of heart disease, it’s relation to healthy hearing, and actions people can take to protect both their heart and hearing health.

According to the AHA, heart disease is our nation’s No. 1 killer. And according to the Centers for Disease Control and Prevention (CDC), about every 25 seconds an American will have a coronary event. About one every minute will die from one. But there is good news: There are things people can do to protect the health of their heart and reduce their risk of heart disease progression.

Coronary artery disease, usually referred to as simply “heart disease,” is the most common form of cardiovascular disease. It is a disorder of the blood vessels of the heart that can lead to a heart attack. A heart attack happens when an artery becomes blocked, preventing oxygen and nutrients from getting to the heart. (Source: U.S. Department of Health and Human Services, National Institutes of Health, National Heart, Lung, and Blood Institute, The Heart Truth™ National Awareness Campaign for Women about Heart Disease).


Overall blood flow affects the vascular pattern of the cochlea. Studies show that a healthy cardiovascular system—a person’s heart, arteries, and veins—have a positive effect on hearing. Conversely, trauma to the blood vessels of the cochlea can cause damage, negatively affecting a person’s capacity to hear.

In a study published in the June 2010 issue of the American Journal of Audiology,Raymond H. Hull and Stacy R. Kerschen did a comprehensive review of research that has been conducted over the past 60 plus years and found that the negative influence of impaired cardiovascular health on both the peripheral and central auditory system and the potential positive influence of improved cardiovascular health on these same systems has been found through a sizable body of research.
BHI sees our participation in American Heart Month and National Wear Read Day® as an important contribution we can make to saving millions of lives in our country. Not only is it a way to raise awareness of the life-saving importance of protecting your heart—but it’s an opportunity to highlight the connection that heart health has on hearing health. Our efforts also will help inform people with heart disease that their hearing may be at risk and that it is important for them to include hearing checks as part of their routine medical exams.

Since 1963, Congress has required the president to proclaim February "American Heart Month" to urge Americans to join the battle against cardiovascular disease.The Heart Truth®—a national awareness campaign for women about heart disease sponsored by NHLBI and partner organizations—established National Wear Red Day® to give women a personal and urgent wakeup call about their risk of heart disease.

For more information please go tohttp://www.nhlbi.nih.gov/educational/hearttruth/events/wear-red.htm.

®National Wear Red Day is a registered trademark of HHS and AHA.

Hearing Loss Forum

To kick off the new year we've created a small online community to help support those who directly and indirectly suffer from hearing loss. Covering such topics as:

• Hearing Loss 101
• Think you may have a hearing loss? Were you recently diagnosed with a loss? Wondering what to do next?

• Financial Assistance
• Share information about insurance coverage, tax credits, and national benefit organizations that help people access hearing loss treatment devices.

• Hearing Loss Treatment-Hearing Aids
• Discuss alternative options available to treat hearing loss including cochlear implants, medical treatment, assistive devices, and aural rehabilitation/counseling.

• Family and Relationships
• Does someone in your family have a hearing loss, but they won’t admit it? Discuss strategies for communicating with loved ones who have a hearing loss, including learning how to deal with resistance and denial.

• Technology
• Advancements in hearing loss technology and accessibility occur every day-discuss them here.

Please take advantage of this wonderful opportunity to share and help others who suffer from hearing loss and spread knowledge and experiences with others. Together we can make a difference.

You can visit the forum at: http://forum.edisonstanford.com .

Note: All posts on the forum are mediated.

The Importance of Hearing Loss Pre-assessment

Hearing health professionals and hearing aid manufacturers have been using the common-sense "signs of hearing loss" in their public relations and advertising probably since the beginning of the hearing health industry as a method of educating people to seek treatment for their hearing loss with hearing aids.

This continues to be one of the most critical on-going education activities we can do to help people with untreated hearing loss for the following key reasons:

• 6 of 10 new hearing aid users purchased their very first hearing aid because they realized their hearing loss was getting worse. (Source: MarkeTrak VIII)
• 50% of people who admit they have a hearing loss but do not use hearing aids report they chose not to adopt hearing aids because they have never had their hearing checked. (Source: MarkeTrak VII)
• Offering people FREE hearing tests may be effective in bringing in some people into hearing health professional offices, but for the vast majority of people with untreated hearing loss sitting on the fence, they lack insufficient information to make any step toward entering a hearing health professional's office.
• It is our belief that hearing loss problem recognition is a critical precursor to hearing loss problem resolution.

To this end utilizing both objective and subjective information across four databases involving nearly 11,000 subjects, Sergei Kochkin, Ph.D. and Ruth Bentler, Ph.D. have shown in the November 2010 Hearing Review that the BHI Quick Hearing Check has high validity, reliability and utility; it is significantly related to nearly all key quality of life issues; and it demonstrates that standard audiological definitions of hearing loss based on dB loss better ear, may in fact need to be re-thought, since consumers tend to rate their subjective hearing loss much higher than what we state in our text books. The research demonstrates this tool can be used for effectively providing consumers with more information about their hearing loss and moving those with hearing loss closer to seeking a hearing solution.

The availability of this instrument represents a major opportunity for the hearing health industry to strategically attack one of the key barriers to hearing aid adoption; consumer's insufficient information about their hearing loss. There are currently two easy-to-use versions of this test—and both can be used for free and without permission from BHI (www.betterhearing.org). One is a paper and-pencil form in which the test-taker simply circles his/her responses and then uses the instructions on the back of the sheet to obtain a hearing score and recommendation for taking action.  HHP may print this form themselves or purchase them from the BHI in tablet form.

A simpler “no brainer” version that automatically scores the test and presents the results with the click of a button can be found online at www.hearingcheck.org (also a BHI Web site). It’s our hope that hearing care professionals and the hearing industry will instantly see the huge opportunity this test affords us and use it in all hearing-related promotions

The Consequences of Untreated Hearing Loss

Sergei Kochkin, Ph.D., Executive Director, Better Hearing Institute, Alexandria, VA

Many people are aware that their hearing has deteriorated but are reluctant to seek help. Perhaps they don ’t want to acknowledge the problem, are embarrassed by what they see as a weakness, or believe that they can “ get by ” without using a hearing aid. And, unfortunately, too many wait years, even decades, before getting treatment.

But time and again, research demonstrates the considerable negative social, psychological, cognitive and health effects of untreated hearing loss . . . with far-reaching implications that go well beyond hearing alone. In fact, those who have difficulty hearing can experience such distorted and incomplete communication that it seriously impacts their professional and personal lives, at times leading to isolation and withdrawal.

Studies have linked untreated hearing loss to:

• Irritability, negativism and anger
• fatigue, tension, stress and depression
• avoidance or withdrawal from social situations
• social rejection and loneliness
• reduced alertness and increased risk to personal safety
• impaired memory and ability to learn new tasks
• reduced job performance and earning power
• diminished psychological and overall health

Hearing loss is not just an ailment of old age. It can strike at any time and any age, even childhood. For the young, even a mild or moderate hearing loss could bring difficulty learning, developing speech and building the important interpersonal skills necessary to foster self-esteem and succeed in school and life.

If you think you or a loved one suffers from hearing loss, don’t delay another day. Visit a hearing a professional and take the first step toward a world of better hearing.


To receive literature on hearing loss, its treatment and prevention call the Edison Stanford Hearing Center at 801-373-5887 or visit our website at www.edisonstanfordhearing.com.

Hearing Better May Mean Earning More

(NAPS)—People with untreated hearing loss may see their income decrease by as much as $30,000 a year, according to a national survey by the Better Hearing Institute. But hearing aids were shown to reduce the risk of income loss by 90 to 100 percent for those with milder hearing loss, and from 65 to 77 percent for those with severe to moderate hearing loss.

Most of the more than 34 million Americans with hearing loss are either in the workforce or in school. The loss in income for people with untreated hearing problems, due to underemployment, is estimated at $176 billion.

Hearing is critical to effective communication in the workforce. The ability to hear and listen well enables employees to be more productive and understand the work that has been assigned. Poor communication can result in unhappy customers, missed deadlines, poor morale among co-workers and mistakes on the job.

Effective hearing may also be critical to ensure safety on the job.

In the study, those with unaided severe hearing loss had unemployment rates double that of the normal-hearing population, and nearly double that of their aided peers.

“People are losing their hearing earlier and staying in the workforce longer,” says Sergei Kochkin, executive director of the Better Hearing Institute. “In today’s tough job market, hearing your best is essential for career success.”

Hearing aids remain the optimum treatment for the vast majority of people with hearing loss. Yet only 40 percent of Americans with moderate to severe hearing loss, and only 9 percent of those with mild hearing loss, wear them.

Half of all people with untreated hearing loss have never had their hearing professionally checked. To help, the Better Hearing Institute has a five-minute hearing test at www.hearingcheck.org. You can learn more about hearing loss and how to help it at www.betterhearing.org.