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What parents want to know at diagnosis and during the first year

Roush, Jack; Harrison, Melody

doi: 10.1097/01.HJ.0000324172.51360.11
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Jackson Roush, PhD, is Professor and Director of the Division of Speech and Hearing Sciences, University of North Carolina School of Medicine, and a Fellow of the Frank Porter Graham Child Development Institute. Melody Harrison, PhD, is Associate Professor in the Division of Speech and Hearing Sciences, University of North Carolina School of Medicine.

Correspondence to Dr. Roush at jroush@med.unc.edu.

The information that families need when their child is diagnosed with hearing loss has been a topic of discussion and investigation for more than two decades. When given the opportunity to describe what they want from professionals, families have repeatedly indicated they want factual information about the hearing loss and its effects on their child's development. It has also been reported that parents want information about the full range of intervention options, and ramifications of the hearing loss on education.1,2

There has also been a recurring emphasis on the need for more empathetic behavior by professionals and the need for them to have a greater understanding of the emotional impact of the diagnosis on the family.3–5

Recently, 600 questionnaires were mailed to parents receiving an introductory subscription to Volta Voices. The questionnaire was designed to identify the information families want to have, not only at the time of diagnosis, but a few months later as well. The need to identify parent priorities at two specific points in time was based on the findings of Martin and colleagues,2 who reported that many parents felt they accepted their child's hearing loss relatively quickly and were soon ready to move ahead. If that is indeed the case, parents' needs for information are likely to change within the first few months following audiologic confirmation of hearing loss.

The questionnaire consisted of two similar lists of topics. Parents were asked to examine the topics and indicate whether each should be given a high, medium, or low priority at the time their child's hearing loss was diagnosed. They were also asked to list the four most important topics in ranked order. They were then asked to repeat the process and respond to a second list as they would rate the priority a few months following their child's diagnosis. Several new topics were added to the second list; however, most were identical. Examples of topics on both lists were: Causes of hearing loss, Realistic timelines for learning speech and language, and Understanding the audiogram.

All parents whose responses were included in the final analysis had children between the ages of 3 months and 5 years, 10 months. Two-thirds of the parents had a child with a severe-to-profound hearing loss.

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PARENTS' PRIORITIES AT DIAGNOSIS

Parents rated Causes of hearing loss as their highest information priority. Historically, only about half the cases of childhood hearing loss have had known causes,6 although the advent of genetic testing is substantially reducing this number. Even so, many parents struggle, sometimes for years, with the question of causality. One father wrote, “You try to do all the right things for your children. When something like this happens, [and] you can't explain or point to a cause for it, your mind just won't leave it alone. You keep going back to it over and over.”

Coping with the emotional aspects of hearing loss was ranked as the second highest priority. A diagnosis of hearing loss is life-changing for many families. Parents may accept their child's hearing loss and want information and guidance to begin helping their child; however, to varying degrees, parents struggle to cope with the emotional aspects of the hearing loss throughout the child's developing years.

It is important to remember that each family is unique and situations that one family might find easy to deal with could be overwhelming to another. Thus, a diagnosis of mild hearing loss can be as devastating to a family as diagnosis of a profound loss is to another. Parents have indicated that a supportive and empathetic audiologist can be essential in helping them deal positively with their feelings and their specific situation. A negative or non-supportive attitude can create barriers to developing a positive collaborative relationship.7

Understanding the audiogram was another frequently selected topic. Months and even years after the hearing loss has been diagnosed parents may be unable to fully understand their child's hearing loss, as depicted on the audiogram. As time goes by, they may be less and less comfortable asking for clarification of the abstract symbols and acronyms that hearing and speech professionals use so freely.

Careful explanation of the audiogram each time hearing is assessed is desired by many families and may facilitate their understanding. Acknowledgment by the audiologist that the audiogram is abstract and difficult to comprehend may cause parents to feel more comfortable asking questions. Moreover, it is important to recognize that most families are not interested in the audiogram, per se, but rather what it can tell them about their child's hearing. In that context, it is important for families to understand the limitations of the audiogram.

Another high-priority topic was Learning to listen and speak. As a result of advances in hearing aid technology, cochlear implants, and earlier age of identification, children with hearing loss, even those with severe-to-profound losses, are experiencing unprecedented success in speech, language, and auditory development. Parents are instrumental as language models and facilitators. Most are interested in information that will instruct and support them in these areas.

Families who are participating in family-focused intervention programs are probably receiving information on these topics. But many children with mild-to-moderate hearing loss and some with more significant degrees of hearing loss may be getting little or no guidance. Information on helping their children acquire listening and speaking skills should be available to all parents regardless of whether or not they are involved in an intervention program and regardless of the type of intervention program. A web site we have found particularly useful was developed by Mary Pat Moeller and colleagues at Boys Town National Research Hospital (www.babyhearing.org). Amy Robbins also provides guidelines in this issue for communication-enhancement strategies that families can implement in their homes.

Audiologists who create a collaborative partnership with the family and an early interventionist or speech-language pathologist who is knowledgeable about how various degrees of hearing loss affect language and speech are most likely to facilitate the desired outcomes for the child.

Understanding the ear and hearing was also selected as an important topic. Although the process is complex, many parents want to understand where in the ear the problem lies and how it affects their child's ability to hear. Although parents may differ in the level of information they desire, almost all are interested in knowing more about the structure and function of the ear. Clearly written material with simple diagrams can be helpful.

An informative booklet, So Your Child Has a Hearing Loss: Next Steps for Parents, is available from the Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell). There are also some excellent web sites that provide information geared to the needs of parents. Table 1 summarizes priorities identified by parents at diagnosis.

Table 1

Table 1

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PARENTS' PRIORITIES LATER ON

A few months after diagnosis of hearing loss, the survey found that parents' priorities were all related to developing their child's ability to communicate effectively and to early-intervention services. Although it was not ranked as highly at the time of diagnosis, a few months later Learning to listen and speak was viewed as the highest priority for families. This may reflect acceptance of the hearing loss and an eagerness to begin a plan of action. A related topic that parents also selected frequently was Realistic timelines for learning to listen and speak.

That parents gave these topics a high priority is a clear indication of their commitment to helping their child develop auditory and language skills. Pediatric audiologists will want to work closely with speech-language pathologists and early interventionists in the delivery of services related to speech, language, and auditory development.

It is especially important to have access to good information regarding developmental milestones. For families who want to provide an optimal language-learning environment for their child, having materials describing the stages of development in audition, speech, and language is crucial. AG Bell provides a number of brochures and resources for families, available on-line.

Cochlear implants also received a high priority in the months following diagnosis. While many parents have heard about cochlear implants, often they do not have accurate or complete information. To these parents, cochlear implants may appear to provide critical access to speech and oral language for their child. Unbiased information regarding candidacy for the device as well as other amplification options for children with hearing loss in the severe-to-profound range are essential for parents who want to make informed choices for their young children. The priority given to this topic may be yet another indication that soon after diagnosis families are interested in pursuing options for their child and are ready for different information from what may have seemed most important to them at the time of diagnosis.

Families repeatedly indicated they want objective information about Communication options. They reported feeling frustrated when few options were presented and other possibilities were discovered later in their child's life. The high ranking of this topic underscores the importance of providing families with a full range of communication options as early as possible. Clearly written information is available to parents on the web at www.ncbegin.org and www.listen-up.org.

Finally, parents in the survey considered two additional priorities important in the months following diagnosis: Responsibilities of early intervention agencies and Legal rights of children with hearing loss. Both topics are related to public policy and provision of early-intervention services. Table 2 summarizes parent priorities for information in the months following diagnosis.

Table 2

Table 2

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CONCLUSION

The priorities summarized in this article represent those most frequently indicated by a group of parent respondents. However, it is important to remember that every family is unique and that individual parent priorities are likely to differ.

Still, regardless of priority, nearly all families want to make decisions based on as much information as possible.8 Initially, they may look to professionals for guidance in making choices. But, if they are given complete and unbiased information presented in a comprehensible format, parents can become the most knowledgeable and effective advocates for their child.

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ACKNOWLEDGMENTS

The authors would like to thank the Alexander Graham Bell Association for the Deaf and Phonak AG for their support of this work.

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REFERENCES

1. Williams, DML, Darbyshire JO: Diagnosis of deafness: A study of family responses and needs. Volta Rev 1982;84:24–30.
2. Martin F, George K, O'Neal J, Daley J: Audiologists' and parents' attitudes regarding counseling of families of hearing-impaired children. Asha 1987;29(2):27–33.
3. Roush J: Implementing parent-infant services: Advice from families. In Seewald RC, ed., A Sound Foundation Through Early Amplification: Proceedings of an International Conference. Stäfa, Switzerland: Phonak AG, 2000: 159–165.
4. Corcoran J, Stewart M, Glynn M, Woodman D: Stories of children with hearing loss: A qualitative analysis of interview narratives. In Seewald RC, ed., A Sound Foundation Through Early Amplification: Proceedings of an International Conference. Stäfa, Switzerland: Phonak AG, 2000: 167–173.
5. Luterman D, Kurtzer-White E: Identifying hearing loss: Parents' needs. AJA 1999;8:8–13.
6. Fortnam H, Davis A: Epidemiology of permanent childhood hearing impairment in the Trent region 1985–1993. Brit J Audiol 1993;6:409–446.
7. Sjoblad S, Harrison M, Roush J, McWilliam R: Parents' reactions and recommendations after diagnosis and hearing aid fitting. AJA 2001;10(1):24–31.
8. Roush J, Matkin N, eds.: Infants and Toddlers with Hearing Loss: Family-Centered Assessment and Intervention. Baltimore: York Press, 1994.
© 2002 Lippincott Williams & Wilkins, Inc.