Guidelines for Audiologists Providing Informational and Adjustment Counseling to Families of Infants and Young Children With Hearing Loss Birth to 5 Years of Age

A. Informational Counseling

Audiologists are involved with all aspects of early identification of hearing loss, including program development, staff training, coordination, management, assessment of program quality, oversight of outpatient referral, and reducing lost to follow-up ( JCIH, 2007). Audiologists are the most qualified professionals to provide ongoing training and oversight of hospital nursery staff relative to the newborn hearing screening process ( JCIH, 2007). As such, and to the extent possible, audiologists should be the professionals who communicate with parents when a baby has not passed a hearing screening. However, it is recognized that within certain medical settings audiologists may not be available to convey the results before hospital discharge. Under those circumstances, audiologists ensure that others (such as nurses, technicians, or physicians) provide screening outcomes in oral and written forms and in a sensitive and considerate manner.

To facilitate this process, in-service education should always include information about how hearing screening results are presented to families, assuring that parents understand the reasons that a failure might occur in the nursery, appreciate the need to promptly follow-up with further screening or audiologic testing, and that early hearing loss detection often occurs over multiple clinical visits.

The following principles support effective informational counseling:

• Communication with parents is confidential and presented in a family-focused manner.

• Information is delivered in a clear and concise manner avoiding technical jargon.

• Parents are given the opportunity and encouragement to ask questions.

Initial information in verbal and written forms and in the language used by families in the home should include

• the rationale for screening of the newborn for hearing loss,

• a description of screening procedure(s) and possible outcomes,

• explanations for a failed screening outcome and its implications,

• the importance of prompt follow up ( ASHA, 1996, 2004a; JCIH, 2007),

• reasons why additional testing might be needed.

It is important to remember that if information about the screening process is provided only after a mother is admitted to the hospital to deliver her child, she may not have the level of concentration needed to consider adequately the information being presented. Therefore, it is recommended that educational materials also be

• provided as part of hospital prenatal education programs and/or public health clinic outreach programs,

• written at a 4th to 5th grade literacy level,

• available in the preferred language of the family.

As already noted, recommendations for follow-up audiologic services (i.e., second stage outpatient rescreen and/or direct referral for testing by an audiologist) should be delivered in person to the parents by the audiologist. Use of the phrase “referral for further testing” rather than the term “failure” is more sensitive language and less alarming for conveying screening results and recommendations. Presenting these findings in a positive manner that emphasizes their importance may help to ensure that recommendations for additional testing are followed. Because of mitigating circumstances, communicating this information to parents of children in the well-baby nursery may be different than communicating the same results to parents of children who have extended stays in the NICU. If follow-up is needed, families should receive

• explicit recommendations on how to secure follow-up testing, including names and phone numbers of follow-up screening facilities;

• an audiologist to whom to direct questions in the interim;

• local, state, and national resources to obtain information regarding subsequent stages of the EHDI process.

Additionally, although the goal of universal newborn hearing screening is to identify all infants with developmentally significant hearing loss, it is recognized that some children with minimal to mild degrees of hearing loss and unusual configurations of hearing loss will pass the newborn hearing screening ( Johnson et al., 2005). Similarly, children who experience late-onset hearing loss ( Fortnum, 2003) also are likely to pass newborn screening ( JCIH, 2007). When children have passed a newborn screening and at a later date are diagnosed with permanent types of hearing loss, this may complicate acceptance of the diagnosis by some families. Therefore, despite passing a newborn hearing screening or when families choose to not participate in screening, parents should be counseled about the need for ongoing surveillance and periodic monitoring of auditory and speech-language skills throughout early childhood ( JCIH, 2000, 2007).

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B. Adjustment Counseling

Despite advances in screening technology and undeniable advantages of early intervention for hearing loss, there are emotional challenges associated with the newborn screening process for families ( Tharpe & Clayton, 1997). Consider that because of the advent of universal newborn hearing screening, parents are receiving unsolicited information about the program and their infant's hearing screening outcome at a sensitive and potentially vulnerable time. Consistent with informed consent and ethical practice, parents should be informed through verbal and written information that their newborn's hearing will be screened prior to hospital discharge, and screening outcomes also must be communicated. Parents should have the opportunity to opt out of the hearing screening for personal or religious reasons. Regardless, it is important to provide support counseling at this sensitive and emotionally fragile stage of the EHDI process. Adjustment counseling for families whose infants have failed a screening may include listening and responding to fears or concerns expressed by families, and ensuring follow-up of the failed screening in a timely manner to ameliorate stress and anxiety in families.

The timing of receipt of screening results coupled with the manner in which this information is conveyed has the potential to interfere with parent-child bonding, which is essential to the mental health of children ( Gregory, 1999, 2001). Therefore, this is a critical juncture in the identification process and might well determine whether parents comply with the recommendation for further assessment.

There might be occasional circumstances when hearing screening at a later time would be more appropriate for some families ( Eichwald, 2007; Luterman, 2007; Young & Tattersall, 2007). A small percentage of parents may refuse the in-hospital hearing screening, and, particularly in cases of the medically fragile NICU infants, families may choose to defer hearing screening. Under these circumstances, information about hearing screening, hearing loss, developmental milestones, and the availability of hearing screening after hospital discharge should be provided. Families should be supported in whatever decision they make regarding the screening process. However, families also should be made aware that in some states data on babies missed and/or those who refuse the hospital-based newborn hearing screening are reported to the state ( National Center for Hearing Assessment and Management, 2007).

Despite these challenges, there is evidence that the majority of parents of children with normal hearing and hearing loss desire newborn hearing screening and recognize the importance of early detection of hearing loss even when parents experience stress and anxiety at the time of diagnosis ( Barringer, Mauk, Jensen, & Woods-Kershner, 1997; Davis et al., 2006; Luterman & Kurtzer-White, 1999; Watkin, Beckman, & Baldwin, 1995). Therefore, the importance of coupling the screening process with parent information and support is crucial for facilitating smooth and timely transitions to the diagnostic process. Personnel involved in screening programs should be vigilant about improving outcomes (decreasing both the false positive and false negative rates), enhancing the manner and content of information provided to families, and optimizing the timing, delivery, and quality of information from the newborn hearing screening ( Arnold et al., 2006; Davis et al., 2006).

A. Informational Counseling

An audiologist is typically the first and most desired professional who bears the responsibility for describing the hearing loss and its implications to family members ( Harrison & Roush, 2002; Luterman & Kurtzer-White, 1999). This responsibility requires audiologists to be knowledgeable, skilled, and experienced in providing information that might be upsetting, stress-evoking, and even painful for some families. Equally important is the follow-up emotional support, guidance, and education that must be provided to families ( Matkin, 1988). It is important to remember that it is at this point in service delivery where individualized continuity of care by an audiologist is initiated.

In the initial stages of diagnosis and confirmation of hearing loss, the audiologist will need to assume a substantial role in providing information and explaining procedures for assessing hearing in children. This may include the following:

• reasons why sleeping during testing is desirable for some tests, but not others;

• reasons for the use of moderate sedation to achieve optimal test conditions and why medical monitoring of the child's health status is required;

• explanations of different test procedures and why each is important;

• explanations for why some tests may need to be repeated periodically.

Sharing audiometric results is a routine matter to audiologists, and frequently the initial interactions with families take on the effect of a rehearsed verbal template, in which the details of complex tests are explained in lay terminology. Although a necessary component of the counseling process, this imparting of test results, or informational counseling, can be perceived by the listener as a way of maintaining an uncaring professional distance. Beazely and Moore (1995) have discussed this in terms of “wearing an expert mantle” rather than making genuine, heartfelt contact. It is recommended that initially, audiometric results be explained to families in functional terms. In other words, families need to understand the impact of the hearing loss on a child's development more than the axes on the audiogram and hearing levels in decibels.

Because 90% or more of infants with hearing loss are born to hearing parents, most families have very little knowledge of childhood hearing loss. Furthermore, some parents may still be integrating their baby into the family unit with natural uncertainty and insecurity. Yet, families do possess parental instincts and a developing knowledge of their child and should be enlisted as collaborators in all aspects of the diagnostic process rather than being treated as passive participants. It is well established that involvement of families in the provision of clinical services is crucial for families' acceptance of hearing loss ( Luterman, 1999). Collaboration may include active roles such as

• shaping the priorities and objectives of the visit;

• providing descriptions of their child's auditory behaviors, either through conversation or completion of questionnaires;

• sharing observations of their child's development and behavior;

• participating with the child in demonstration of skills or compliance with the test battery;

• providing feedback on the child's behavior throughout the behavioral audiologic test battery (i.e., how representative was the behavior of the child?).

A family's presence and/or participation allows the audiologist to explain the purpose of each step of the assessment, which in turn improves the family's ability to understand the findings of an otherwise abstract and technical test process.

It is recommended that during the confirmation of hearing loss

• follow-up testing to confirm the initial diagnostic impression be scheduled as soon as possible to minimize the family's concern during the diagnostic phase; when possible, audiologists contact families ahead of time to explain the upcoming tests;

• all diagnostic testing be conducted by the same audiologist in order to enhance continuity of care, encourage the development of rapport and trust, and minimize the likelihood of receiving different interpretations of the results from different audiologists;

• parents' questions and comments guide the quantity of information and the level of detail provided;

• audiologists provide time for parents to discuss their problems and concerns.

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B. Adjustment to Hearing Loss Counseling

Audiologists should be aware that first impressions may set the tone for subsequent interactions with families. Therefore, a positive and respectful attitude is a necessary first step for developing an effective rapport with families. Respect includes sensitivity to nontraditional family structures, socioeconomic circumstances, cultural diversity, and differing viewpoints, regardless of whether those views are mutually embraced or whether realities are completely understood. Once rapport and respect are established, a sense of trust can evolve, which is strengthened as the relationship continues. The audiologist allows for the time necessary to establish such trusting relationships, even at the risk of creating slight delays in the diagnostic process.

Adjustment to hearing loss counseling by audiologists at this important juncture may include the following:

• recognizing a family's fragility during the EHDI process;

• recognizing the impact of the diagnosis of hearing loss on a family, including the child's siblings, grandparents, and other extended family members;

• identifying family supports (e.g., friends, clergy) and encouraging families to seek their assistance when needed;

• focusing on the family's strengths and special needs within the context of their cultural and value systems;

• recognizing the difference between acute grief and clinical depression, and making appropriate referrals;

• providing emotional support.

For counseling to be most effective, informational and adjustment counseling must be balanced. Although families will need information to facilitate decision making, many times families are not requesting information, but rather are expressing an emotional or affective concern about their child's recently identified hearing loss. That is, many times a family's message or questions will contain both content and affective components, and deciding which component requires priority is critical in developing a trusting relationship. The ability to distinguish content from affective components is referred to as “differentiation” ( Cormier & Hackney, 1999). It is one of the primary learning objectives in counselor education and is essential in the developing relationship between audiologists and families. Cormier and Hackney advocated that audiologists' responses should reflect the patient's or families' intent. That is, when a family requests information, the audiologist should respond with information, and when a family expresses an emotion, the audiologist should let the family know that the emotion was acknowledged and respected.

By having their emotional needs addressed, families may be more amenable to new information and more likely to make informed decisions. Yet, some audiologists may feel compelled to protect families from emotional reactions after receiving unexpected, upsetting, and potentially stress-evoking information ( Luterman, 2001). Any effort to rescue families (i.e., to imply the audiologist's approach guarantees a positive outcome) should be avoided, as this may actually foster dependency. Families need to progress at their own rates through various stages of personal adjustment.

An awareness of the stages of grief as a response to hearing loss is not sufficient for understanding a family's reaction to the confirmation of hearing loss. That is, Luterman (2006a) noted that the grief reaction of parents to the identification of hearing loss is not similar to the loss of a loved one to death. In death, there is finality to the grief; there is a burial and life can go on, albeit with pain and loss. With hearing loss, grief can be chronic, lived every hour of every day. The child may be a constant reminder to the parents of this loss. No matter how well adjusted the parents seem to be to the reality that their child has a hearing loss, there can be trigger events (e.g., child's birthday party, anniversary of their original diagnostic evaluation, individualized education program [IEP] meetings) that remind them of the loss and those initial feelings of pain and sorrow may return.

In some cases, grief associated with the diagnosis of hearing loss in children may result in clinical depression in parents. It is important for audiologists to recognize the signs of clinical depression, as opposed to acute grief, to help identify which families would benefit from referral to a mental health professional. The clinical signs of depression include

• not keeping appointments;

• deep feelings of sadness;

• difficulty thinking, concentrating, remembering, or making decisions;

• feelings of hopelessness, pessimism;

• loss of energy or increased fatigue;

• insomnia;

• withdrawal/isolation from family.

Providing emotional support to families involves different communication skills than informational counseling, including the ability to talk less, listen more, and listen actively ( English, Lucks, Rojeski, & Hornak, 1999). Clinicians need not be afraid of periods of silence, tears, or expressions of anger. Silence may be a time when parents are attempting to integrate and think about their feelings and it is important that parent silence not be interrupted. Audiologists need to be comfortable with the silence and allow families this time. Tears also are a natural expression of grief. The simple act of handing a tissue to a distressed parent is a silent form of acknowledgment and support of the parent's feelings.

In addition, anger is often a reflection of a family's fear, a sense of violation of expectation, and a loss of control. However, anger is not necessarily a judgment on the audiologist's competency. Provision of emotional support, despite this anger, is crucial. Audiologists must be especially sensitive to families whose vulnerability and fragility (e.g., due to extended time in NICU, chronic illness, limited parental education, concurrent family stressors) necessitates extra time for them to understand and accept their child's hearing loss. Recognizing a family's fragility assists in determining the rate that they can integrate and process information. This recognition can help audiologists respond sensitively and without defensiveness should they become the target of a family's anger or frustration.

Although the confirmation of hearing loss may evoke an emotional response, the audiologist should view this response as a revealing affective component in the evolving counseling process. The establishment of a positive professional relationship can bring comfort to families during this stressful time. Audiologists also should recognize that the magnitude of the hearing loss is not a predictor of the extent of the parental stress response. Regardless of the degree of hearing loss, it is the parent's perception of the problem that dictates the amount of support needed.

Lederberg and Golbach (2002) found a difference in the stress experience of parents with deaf and hard of hearing children at age 2 years but not at age 3. Early diagnosis and intervention appear to be the best prevention strategy against stress for the parents of deaf and hard of hearing children.

A. Informational Counseling

Audiologists are responsible for providing families with unbiased information, recommendations, and appropriate educational and communication options based on family decisions and informed choices. As such, audiologists are responsible to families and not for families.

Children with hearing loss, even those with similar audiograms, represent a heterogeneous population. These children and their families will come to audiologists with a wide range of concerns. Listening to families about their hopes and desires for their children will guide this process. Informational counseling to families might include

• communication options appropriate for the family's desire for spoken or visual language;

• technology options, including candidacy for cochlear implants;

• the range of educational options appropriate to their child's hearing loss and developmental needs, including encouraging families to observe intervention programs on-site;

• provision of information relative to the importance of ongoing monitoring and verification of amplification;

• hearing aid orientation, troubleshooting, and maintenance for families, other caregivers, speech-language pathologists, educators/early interventionists, and the child when appropriate;

• long-term audiologic follow-up, including addressing questions of progressive hearing loss;

• processes associated with educational transitions;

• public law and advocacy relevant to public education and public access;

• other informational resources including, but not limited to, Web sites, printed materials, and DVDs.

During this time, communication among the audiologist, the child's medical home ( American Academy of Pediatrics, 2005), and child's family is essential for securing appropriate services ( JCIH, 2007). This also might help avoid confusion from conflicting information or recommendations received from various allied professionals.

Audiologists should encourage parents to acknowledge and celebrate the capabilities, as well as the special needs, of their children. By the late preschool years, children should be included as much as possible in feedback and decision making in their own management. This will initially consist of small steps (e.g., selecting the color of their hearing aids, learning to check their hearing aid batteries) that can lead to enhanced self-esteem and greater independence.

An additional responsibility of audiologists is to advocate for the development of quality educational options within their communities. Currently, family decisions are too often based solely on availability of services; that is, selecting from a limited number of services rather than the selection of their most desired option for communication and education. Therefore, audiologists should advocate for the establishment of diagnostic teaching facilities and a range of educational options, if not available, within the community. In addition, it is important that audiologists participate on multidisciplinary management teams with emphasis on facilitating communication, social-emotional, and cognitive development and, later, academic performance. It also is important for audiologists to participate in the IFSP and, later, the IEP processes. As families increasingly become empowered to serve as effective advocates for their children (refer to Figure 1), the role of the audiologist as care coordinator should begin to shift to facilitator ( ASHA, 2006).

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B. Adjustment to Hearing Loss Counseling

The infusion of counseling into all interactions with families, mentioned earlier in this document, is especially important at this juncture. With an expanding array of technologies, educational options, and communication modes, families are faced with making complex decisions very early in the intervention process. They will need information relative to a range of options provided in an unbiased, supportive manner.

Intervention should be provided with sensitivity to the family's readiness to proceed. There may be a wide time range of when families are ready to proceed with intervention. That is, some families come into the process with strong coping skills and extensive support structures allowing them to move forward in a timely manner.

Scorgie, Wilgosh, and McDonald (1998) summarized the most important variables for understanding the coping process under four headings:

• family variables (e.g., family socioeconomic status, cohesion, hardiness, problem-solving skills/creativity, roles and responsibilities, and composition);

• parent variables (e.g., quality of marital relationship, maternal locus of control, appraisal, and time/schedule concerns);

• child variables (e.g., degree of disability, age, gender, and temperament);

• external variables (e.g., stigmatizing social attitudes, social network supports, and collaboration with professionals).

Calderon and Greenberg (1993), as well as Calderon, Greenberg, and Kusche (1991), were able to show that successful coping on the mother's part has a significant influence on child development. The more successful the mothers were in acquiring helpful strategies for coping with their deaf child, the better developed the children's emotional sensitivity, reading competence, and problem-solving behavior. The children also exhibited less impulsive behavior, higher cognitive flexibility, and better social competence.

Webster-Stratton (1990) pointed out another crucial aspect of coping that demonstrates the close correlation between parental experience and parental behavior: Specifically, there was a close association between reported parental stress and more frequent use of punishment, discipline, and constraint in day-to-day parenting.

When families lack resources to engage in even the most basic aspects of service delivery, audiologists must consider the number and types of demands they make on families. Awareness of the challenges each family unit faces should guide the audiologist's expectations on the family's capacity to fully follow through with an early intervention plan. Thus, a lack of follow through with the audiologist's recommendations during this time may reflect a variety of underlying causes and should not be misconstrued as a lack of caring or, as is sometimes suggested, constituting child neglect.

Audiologists must balance their information counseling with families regarding the use of hearing technologies (e.g., digital hearing aids, cochlear implants, or FM systems), with the family's perceived enticement to technology as a “cure.” Although current technology has greatly ameliorated the impact of hearing loss, technology provision alone is not sufficient to the habilitation/intervention process. The temptation to consider technology (particularly cochlear implants) as a cure for deafness should be resisted, as this diminishes the challenges still ahead and ignores the need of families to spend time resolving their loss. At the same time, audiologists recognize when families are in need of information and support in exploring their options and opportunities for their children. Facilitating families' knowledge of options and opportunities sends a hopeful message of optimism and may prevent feelings of fear and isolation.

As intervention plans are initiated, it is important that both audiologists and families recognize that all decisions are subject to change over time. Although continuity of intervention is recognized as an important factor for successful outcomes, families should always be made aware that their initial choices are amendable.

Children might require a period of diagnostic teaching to inform this process. In a diagnostic teaching approach, appropriate individual goals are set, but the interventionist continually monitors the factors that are favorable or unfavorable to a child's learning. The focus of such an approach is prominently on the positive aspect of the question: “What are the techniques and supports that help this child learn most efficiently?” Diagnostic teaching allows for the determination of effectiveness of hearing technology options that may include hearing aids, cochlear implantation, and assistive devices. Moreover, the diagnostic teaching period allows for the determination of an effective method of communication and one preferred and used continually by all members of the family. Some families and children will best be served by auditory/oral approaches (speaking and listening) to communicate while others may require a system with visual supports. Diagnostic teaching also may reveal the presence of additional disabilities not previously identified ( Gallaudet Research Institute, Office of Demographic Studies, 2001).

A rich source of support for families may be found in their relationships with other families of children with hearing loss. Efforts should be made to provide families with formal and informal opportunities to meet and interact with other families with similar experiences when they desire such opportunities. Optimally, these are informed choices families make about when and which interactions would be most beneficial to them. Therefore, adjustment to hearing loss counseling in intervention and habilitation may include

• provision of opportunities both formal and informal to meet and interact with other families of children with hearing loss. The type of interactions that individual families choose will be based on their need for information and their desires to learn more about one or more different communication and education options. These could include introductions to culturally Deaf, oral deaf, and hard of hearing adults who use different communication modes and technology;

• opportunities to observe children and interact with young children who use various communication approaches and technologies;

• development and facilitation of family support groups.

The audiologist's role in family support groups is one of facilitator, rather than instructor. Within family support groups, parents can validate each other's experiences in ways that audiologists cannot. This interaction also can lead to growing parental empowerment as information is shared among families. All family members, including grandparents and siblings, can benefit from attending such sessions or participating in support groups that focus on shared experiences of individuals with similar roles, rather than passively listening to information provided by professionals.

In supplying information to families, audiologists should recognize and respect the family's complex (and often recurring) feelings through the grieving process, not only at the time of initial diagnosis of hearing loss, but also at different intervention decision-making stages and transitions, and throughout the active years of parenting. That is, stress is a complex and evolving emotional response that is internalized differently and triggered differently at various times throughout the time span of parenting a child with hearing loss ( Luterman, 2006a).

Audiologists should be aware that families may be fearful that every subsequent audiologic assessment beyond the initial diagnosis has the potential of revealing additional difficulties or changes (decrements) in hearing threshold levels. Even families that have previously demonstrated excellent coping skills may need additional support upon learning that their child's hearing loss has progressed ( Brookhouser, Worthington, & Kelly, 1994). Furthermore, there is an important role for the audiologist in supporting families with the transition of their children from early intervention to preschool and through to the school-age years.