Conquering hearing problems: scientists and consumers working together
Teresa Ching1, Denis Byrne1, Sharan Westcott2, Sarah Love2
1 National Acoustic Laboratories
2 Australian Hearing
This paper summarises the views expressed by six hearing-impaired consumers of hearing aids about four questions: 1) why some people with hearing loss do not obtain hearing aids; 2) why people do not use hearing aids more often; 3) what do hearing-impaired people want from their next hearing aids; and 4) what help do hearing impaired people want from their clinicians/audiologists.
The National Acoustic Laboratories and the Cooperative Research Centre for Cochlear Implant, Speech and Hearing Research presented a one-day seminar on ‘Conquering hearing problems: scientists and consumers working together’ on 15 November, 1999 as part of a five-day International Conference on Hearing Aid Amplification for the New Millenium. The seminar aimed to increase understanding of issues pertaining to consumers’ needs by providing a forum for researchers and consumers to discuss and share information. Two important areas were explored. The first addressed why some people with hearing loss do not seek help with amplification, and why some people who have obtained hearing aids do not use them. Three consumer presenters contributed their views and those of the organisations they represented. The presenters were Richard Brading, President of Self-Help for Hard-of-Hearing; Roy Shackley, Chairman of the Promotions Committee of Better Hearing Australia, and a member of the Self-Help for Hard-of-Hearing and Australian Tinnitus Association; and Roma Wood, a well-known member of Better Hearing, Australia. The second area related especially to children with hearing loss, and examined what they want from their next hearing aids and what help they require from their clinicians. The three contributors were Elizabeth Ker, the Director of "Hear the Children" Early Intervention Centre and Principal of St Gabriel’s School for Hearing Impaired Children; Zoe Wells, a university student who has congenital severe hearing impairment in both ears; and Andrew Stewart, a hearing-impaired adult who is also a parent of two hearing-impaired children. All presenters will be referred to by their first name in the following summary.
Why don’t more people get hearing aids?
The presenters identified four main reasons why some people with hearing loss do not get hearing aids. The first reason relates to a lack of public awareness of the problems associated with hearing loss and the hearing services available, despite the increased publicity associated with implementation of the voucher system. Both Richard and Roy pointed out that endorsement by public figures that use hearing aids would contribute to making hearing aids more widely acceptable to the community.
Secondly, some young people or people at a working age do not consider hearing aids because the devices are often depicted in advertisements as something for old people. This image reinforces the social stigma associated with hearing aid use. Although many hearing aids are small in size, most are still highly visible. As Roma explained, hearing loss and hearing aids are not accepted as ‘normal’ in the way that poor vision and glasses are. While glasses that are poorly fitted pose a problem only to the wearer, hearing aids that are feeding back become most notable to other people around the hearing aid user.
Thirdly, some people who may have a need for amplification do not obtain hearing aids because they are costly. Cost is a major consideration for people who are not eligible for a voucher, and some may choose to wait until they become eligible. People who could afford the expense might still find it hard to justify the expense to himself or herself, as the money could have been spent on other pursuits of the family. The difficulty of finding out exactly how much a hearing aid costs may also be a major hindrance for people to seek any help at all. Richard recounted from experience how a consumer can only find out the actual cost of acquiring a hearing aid at a late stage of consultation with an audiometrist or audiologist.
Finally, there may also be some other general psychological factors, such as apathy and negativity associated with hearing loss and hearing aid use that deter some people from obtaining hearing aids.
Why don’t people use hearing aids more?
Four factors affect the willingness of people who have been fitted with hearing aids to use them. The first relates to the users’ disappointment with the performance of hearing aids. Ineffective counselling coupled with exaggerated advertisement lead to unrealistic expectations from hearing aid amplification. Users are often especially mindful of situations where hearing aids do not work well, such as in noisy restaurants, a busy road, or in noisy parties, and may forget about how hearing aids are helpful in other situations. The second relates to practical problems that can be rectified if the problems were taken to the audiometrist or audiologist. These problems include uncomfortable earmoulds that lead to sore ears, and hearing aids that feedback. The third relates to the attitude of the individual hearing aid user. If hearing aids are fitted to people who are not ready to accept the device, then it is unlikely that the hearing aids would be used. Last but not least, even if individuals are ready to accept the use of hearing aids, the community may still have negative attitudes towards hearing aid users. In some cases, this may be a real deterrent for usage. One consumer, Roy, hastened to point out that this public attitude is changing. He gave up his in-the-ear hearing aid for a behind-the-ear hearing aid because his experience shows that people take greater responsibility for effective communication when they can see that he has to wear a hearing aid.
What do I want from my next hearing aids?
Hearing aids that are automated to adapt amplification characteristics to the needs of the user reign top of the list. Elizabeth suggested that it would be wonderful if hearing aids could monitor the degree of hearing loss consistently and adjust themselves accordingly to ensure that children with fluctuating hearing loss always have access to clear auditory signals. Both Zoe and Andrew expressed the desire for hearing aids that can help to decipher speech in the midst of party noise or music, and hearing aids that can selectively amplify sounds from behind or in front depending on the listening situation.
Other features that are desirable in hearing aids include elimination of wind noise, compatibility with digital mobile phones, feedback free, waterproof, and in-the-ear hearing aids that are powerful enough for severe losses.
What help do I want from my clinician?
The need for an integrated approach to management of hearing loss is highlighted. Elizabeth and Andrew both emphasized the importance of a clinician working closely with parents, teachers, carers, and related personnel in the management of a hearing- impaired child. They expressed the need for the clinician to review the hearing aid fitting of a child and reassess the habilitation needs if a teacher or parent is concerned that a child is not making progress as expected after appropriate intervention.
All consumer presenters stressed the importance of reviewing management strategies to cater for the changing needs of a growing child. Elizabeth pointed out that an ear-level FM system is not appropriate for a child because it is not tamper-proof, but is suitable for a teenager who would willingly forgo clear auditory speech input in the interest of cosmetic reasons if he or she has access to only a body-worn system. As a hearing-impaired young adult, Zoe expressed the desire to know more about her own hearing loss, about the choices available to her, about techniques to manage disabilities associated with hearing impairment in different situations, and about the devices that she has been fitted with. In her childhood days, all the information was passed on to her parents, but as she becomes older, she wants to take charge and participate in the management of her own hearing impairment. Andrew also pointed out that it is useful for the audiologist to explain the aetiology of the child’s hearing loss to the child when he or she is old enough to understand, so that misbeliefs about the cause of hearing loss can be sorted out.
All presenters reiterated the need for the clinician to provide information about hearing loss, explain results of hearing tests, give details about intervention choices, device choices, and communicative strategies for managing hearing disabilities in children. Parents do not want to be overwhelmed by information, but they do want to make an informed choice about strategies that are most appropriate for their child. Because parents, teachers, and hearing-impaired young adults may lack the background to ask the ‘right’ questions about hearing loss, and they appreciate clinicians being proactive and effective in communicating the information to them. Teachers and parents also rely on the clinician to educate them on the benefits and use of new technology, as well as trouble-shooting of hearing aids, minor hearing aid repairs and maintenance.
As a parent, Andrew expressed the need for audiologists to provide emotional support for parents of hearing-impaired children. This is crucial to enabling and empowering the parents to deal with practical issues that they encounter during the intervention process of their child’s hearing impairment.
Last but not least, Elizabeth pointed out that normal-hearing children would have acquired a lot of language by about two years old. In order to help a hearing-impaired child to develop speech and language like a normal-hearing child, the hearing-impaired child’s audiogram must be determined as early as possible and appropriate intervention must follow soon after. This calls for the development of effective methods for establishing accurate hearing threshold levels, and for selecting and evaluating amplification devices for infants.