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Copyright © 2004 by Thieme Medical Publishers, Inc., 333 Seventh Avenue, New York, NY 10001, USA.
Issues in Family-Centered Pediatric Audiology: An Overview
08 November 2004 (online)
Children with impaired hearing are being identified and are receiving intervention services at earlier and earlier ages.  This trend can be attributed to the implementation of Universal Newborn Hearing Screening (UNHS) programs as well as ever-improving technology in diagnosis and treatment of early childhood hearing impairment. Through a cochlear implant usable hearing sensation can be provided for many persons with profound hearing loss who could not be aided previously. The screening programs appear to be working well, in terms of identifying children with impaired hearing at an earlier age, but these screening programs represent only the beginning of a long road for families of children with hearing impairment. This road may include a second part of the screening process, the diagnostic process, which itself may have multiple parts, and the early intervention process, which may introduce one or more new agencies or professionals. There usually will be a later transition to the school system that may be rocky, but that is beyond our current scope. Another possibility is a discovery of auditory neuropathy during the diagnostic process. Given that this diagnosis often takes a while, the families may feel blind-sided by it. We have become certain that early intervention with children with impaired hearing is important for language learning.  Early intervention used to mean working with toddlers, but now it means working with infants. Understanding and accepting this, however, is insufficient. Some major blocks that impede optimal care seem to center on communication with the family of the newly identified child. In fact, there are problems that arise because of inadequate or even absent communication among the various professionals who are all sincerely trying to help the family.
Mark Ross described the essence of the problem of understanding for families who are being told that their newborn infant has (or may have) impaired hearing. Few such parents have had any experience with deaf people. They know nothing about all the age-old controversies and all of the choices that they will be asked to make. At this stage, what has been going through their minds is the death of their initial dreams, their groping attempts to come to terms with what they perceive as a tragic reality, and their feelings of complete inadequacy in meeting all of the confusing and yet undefined challenges they will have to face (p. 2).
One potentially useful model that is successful for many children is the medical home. The medical home, a concept promoted by the American Academy of Pediatrics, establishes a single professional, usually the pediatrician, as the sole or at least primary source of information for the family about every aspect of their child’s health. The concept is sound in that it reduces the confusion that can arise with multiple information sources. It also can reduce redundancies and conflicts in care. A family may have an existing relationship with a pediatrician before the hearing impairment is diagnosed, and it is natural for the family to turn to the pediatrician or other primary-care physician for information and advice. For this model to work there must be strong communication between the pediatrician and any other practitioner, such as an audiologist, who works with the child. In some cases this can be a substantial list of people. Audiologists often have existing relationships with otolaryngologists in their geographic area, but far less often communicate with pediatricians. There are very likely to be many more pediatricians than otolaryngologists in any area.
One of the drawbacks to generalization of the medical home model is that many infants identified with impaired hearing have no other medical problems. Although many families, particularly those with access to health care through private third-party payers, make regular visits to a pediatrician for well-baby care, not all families do so. It is unusual for the infant with only a hearing impairment to have a medical home.
In this issue we have brought together authors who have experience with families of hearing-impaired children from various perspectives. Marilyn Sass-Lehrer of Galludet University discusses many of the pitfalls confronting the audiologist in follow-up to the UNHS process. Problems may arise at many stages, including rescreening, diagnosis, and intervention. Sass-Lehrer has found that a family-centered approach reduces stress and improves the rate of follow-through at all stages, which, in turn, results in better outcomes for the involved children. Complicating factors such as cultural sensitivity and collaboration also are discussed in the context of family-centered audiological practice.
Gravel and McCaughey present their model for family-centered assessment and subsequent follow-up care. They stress the relationship between the audiologist and the family and suggest that that should continue for at least the first year of life. In the model, the family is incorporated into the decision-making process. The medical home has a place in this model, although there is a realization that it may not exist for a given family. Gravel and McCaughey agree with Sass-Lehrer that the family-centered model reduces stress experienced during the sometimes-long assessment process.
Kovarsky, Kurtzer-White, and Maxwell present some of the results of a qualitative research study. Qualitative data analysis is a powerful tool that is not familiar to many audiologists. Through analysis of focus group interviews, this study demonstrates many of the problems that occur inadvertently in the process of a professional delivering information to a family. They show examples of several kinds of miscommunications, which they term nonhearings, mishearings, misunderstandings, inaccurate information, and inadequate explanations. Reading these stories of origin, it is very easy to adopt a defensive posture and say, “I wouldn’t do that,” or “That doesn’t happen in my clinic.” Although it is true that the specific situations are unique to this study, the analysis can be generalized. Kovarsky et al discuss models of communication that may be used to understand these miscommunications and possibly improve professional informing practices. It is important to note that the specific UNHS system that was studied was able to make changes immediately in procedures and scripts to reduce the frequency of occurrence of the types of problems that are discussed here. Additional focus groups continue to be studied by Dana Kovarsky.
Roush, Holcomb, Roush, and Escolar discuss issues surrounding the child who presents with other conditions along with impaired hearing. This is a group with which they have considerable experience. Conditions such as learning disorders, attention disorders, and visual impairments are fairly common and therefore can be expected to occur along with hearing impairment. Roush et al discuss some of the implications of multiple disabilities on the audiologic process, including the fitting of hearing aids and other assistive hearing devices. For these children the potential complications facing the audiologist and the families may be best addressed within the medical home model, in which the pediatrician is the central professional figure.
Finally, Judith Duchan provides a thought-provoking argument against the traditional medical model that governs most audiological practices. She argues that the medical model, steeped in causal logic, is not the only way to engage in the diagnostic and rehabilitative processes. She invites the audiologist to consider some alternative models, perhaps as a supplement to the medical model. These other approaches, such as social and narrative models, focus more on the barriers and personal issues of the families of patients. Duchan outlines a strategy in which the individual practitioner may examine his or her own values and specific situational requirements in optimizing a practice model.
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