Monday, January 31, 2011

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

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

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