The case report described here draws attention to a powerful variable, namely offhanded provider remarks, which can negatively influence rehabilitation outcomes, specifically for prelingually deaf adults. This group is known to be highly variable in their audiologic/hearing characteristics (Neuman et al, 2017) such that blanket statements are not likely to apply to a given individual. Those in a position to counsel in rehabilitation fields have a special obligation to recognize the weight that their statements can carry in influencing decision-making by such clients (British Society of Audiology, 2012). When treatment options are presented with conflicting messages, a dilemma is created for the client, working against adoption of potentially valuable rehabilitation recommendations (Gagné, 2011; Laplante-Lévesque et al, 2012).
In the case presented here, the issue was a bimodal fit for a young woman (we will call “CC”) with early-onset deafness and one cochlear implant (CI). Increasing numbers of individuals with prelingual, severe-profound hearing loss have been seeking greater access to sound in their late teens and adulthood (Sarant, 2012). For many in this group, one-sided CI use and listening training are usually the only recommendations, especially when previous listening experience or response to electric stimuli is inadequate or questionable (Boisvert et al, 2015).
A hearing aid (HA) in the nonimplanted ear would be an alternative consideration to a second CI, but also has been rarely considered for this population, perhaps due to auditory deprivation of long duration, reports of unpleasant sensations during previous HA trials, and/or lack of objective test gains with a HA (Boisvert et al, 2015). Evidence now, however, supports use of a HA on the ear opposite the CI, known as a bimodal fit, as the standard of care for prelingually deaf adults with one CI (Berrettini et al, 2010; Gottermeier et al, 2016; Neuman et al, 2017).
The protocol for a bimodal fit is key to its success. In the case described later, the individual had volunteered to participate in a three-week study of a bimodal fitting approach that employed frequent audiologist contact, repeated HA adjustments, and client journals as critical components, each found to be valuable in promoting favorable outcomes with bimodal hearing (adaptation, acceptance, and benefit) in this population (Berrettini et al, 2010; Gottermeier et al, 2016).
Despite successes in producing remarkable changes with this protocol, the individual in this case study later abandoned her new HA because of beliefs planted earlier by a hearing health-care provider.
Bilateral profound sensorineural hearing loss due to unknown etiology was diagnosed in the patient we are calling “CC” shortly after birth. She was provided with binaural HAs at age two, which were discontinued at age four. CC obtained an Advanced Bionics Auria CI at age four. CC’s most comfortable mode of communication with hearing persons was sign-supported speech. With acoustic pattern information from her CI, plus lip reading cues, CC achieved limited success in informal spoken-language conversations with hearing persons in social settings. She reported that her CI helped her monitor her speech such that her family could understand some words when she wore the device.
At age 20, after 16 years of unilateral CI use, CC volunteered to participate in a university clinic study of a bimodal fitting protocol. CC reported that her motivation was to enhance interactions in the college classroom and possibly improve communication in any future job situation with persons who have normal hearing. At intake, CC informed the project leaders that her worse ear would not be able to benefit from a HA beyond obtaining minimal cues to the presence of sound. She explained that she learned about her hearing limitations from her mother who had passed along a statement from the home audiologist that CC probably “had no hair cells in her left ear.” Thus, CC began the study convinced that the new intervention would be useless for her.
Despite her early prediction of failure, CC returned to the clinic for gradual increases in HA power (used in conjunction with her Advanced Bionics Harmony CI) and her journal showed increased HA usage, from five hours to eight hours a day. CC wrote at the end of the first week: “Able to recognized [recognize] where noise is coming from in the direction. Also hear more deeply on sounds of words—s, f, ch, sh. More improvement of the pitch of my voice.” CC’s speech-language therapist confirmed these impressions and noticed an immediate lowering of vocal pitch to a more appropriate range in the bimodal condition. These changes suggested integration of the newer acoustic signal with the familiar electric signal.
At the end of the three-week intervention, CC’s responses on a questionnaire of speech, spatial, and qualities of hearing (SSQ) (Gatehouse and Noble, 2004; Noble et al, 2013) showed a favorable change in perceived ease of listening in the bimodal condition for localization of speech, localization of right/left environmental sounds, and ability to tell how far away a bus or truck was. Consonant-nucleus-consonant (Peterson and Lehiste, 1962) phoneme perception scores indicated that the HA provided some benefit, showing 17 percent with CI alone, versus 25 percent bimodally.
Still, CC wrote, “The hearing aid helps in speech therapy but my mom says I have no hair cells.” CC continued using the HA voluntarily during speech-language therapy for four months, but left it off in all other situations, again explaining that she had “no hair cells in her left ear.” Although she recognized benefit in the therapy sessions, she was unable to ignore the influence of her audiologist's impressions of her hearing capabilities.
Resistance to Audiological Rehabilitation
This case study speaks to the risk that professionals face of unduly influencing decision-making by what they say during interactions with clients and parents. In the case of CC, an audiologist’s remarks, repeated by the mother, exerted a strong negative impact on the ability of the deaf client to adopt a potentially valuable intervention. In this instance, the intervention was to add amplification on the ear opposite a CI, the standard of care for deaf individuals to enhance auditory input through binaural hearing. CC showed clear signs of benefit that she, herself, recognized, as well as the study audiologist and speech-language clinician, even within the short time-span of the study. Yet, the advantage gained was inadequate to outweigh the perceived authority of the home audiologist’s words.
Barriers to accessing health care are known to exist for people with disabilities, including those who are deaf (Kuenburg et al, 2016; Smith and Samar, 2016). Knowledge gaps have been attributed to inattention to clients’ prior educational opportunities, their print literacy, and their communication preferences (e.g., sign language versus spoken language), as well as lack of cultural awareness among health-care providers. Smith and Samar (2016) have highlighted the special need for health-care providers to improve the accessibility of information by deaf individuals. As an issue of bioethics and disability rights, health-care access cannot be denied or limited, despite the presence of a disability. That is, a health-care system cannot disallow available treatment from which an individual could benefit purely because of the presence of the disability (Asch, 2001). The opinion of CC’s audiologist might have been prejudiced by a misconception of the degree of “disability” at the ear opposite her CI, automatically disqualifying her for rehabilitation intervention on that ear.
Inasmuch as accurate, factual counseling could facilitate acceptance of bimodal listening by individuals with early-onset deafness, others like CC similarly might be dissuaded by a professional’s personal interpretation of the likelihood of success with any of the several interventions available to these individuals, including HA trials, consideration of one or two CIs, speechreading instruction and practice, online listening practice, and speech-production training (Gagné, 2011; Hull, 2013; Laplante-Lévesque et al, 2012).
The Professional Practice Committee of the British Audiology Society (2012), in their compilation of principles of rehabilitation of adults in routine audiology services, emphasized trust and “congruence” as two of the critical elements of the relationship between client and professional when discussing rehabilitation options. Informed decisions are to result from shared understanding of the effect of the hearing loss and the probable effectiveness of strategies to achieve a client's goals. CC in this case study had clearly articulated her goal to improve communication with persons who had normal hearing, but that objective did not seem to be considered by the home audiologist.
Decision-making that leans toward greater decision power on the part of the clinician than on the part of the client is deemed “paternalistic” rather than truly “informed” (Gagné, 2011; Professional Practice Committee of the British Audiology Society, 2012). Client-centered counseling approaches also have been shown to achieve better adherence to treatment recommendations. Similarly, value has been documented in taking time to consider a client’s general health-care preferences; specifically, how active the client wishes to be as a “decision actor” (Gagné, 2011; Laplante-Lévesque et al, 2012).
Unfortunately, it has not been verified precisely what effectual information sharing comprises, despite the known power of psychosocial influences on one’s thinking (as in group rehabilitation programs; Preminger, 2007). Moreover, the adequacy of the training and qualifications of those who offer rehabilitation counselling to deaf individuals has been questioned (Preminger, 2007). New findings continue to be published that can inform counseling programs while interest in rehabilitation options increases for adults with prelingual deafness. For example, research recently dispelled the notion that asymmetry in duration of sound deprivation does not predict speech recognition outcomes (Boisvert et al, 2015). This notion would have been relevant to decision-making for CC.
In the present case, the client benefitted from bimodal hearing, as evidenced by clinical data, but eventually rejected a HA contralateral to a cochlear implant due to comments made by an early service provider. Health-care providers are cautioned regarding language used when engaging in assessments and other educational interactions with parents and their clients or patients who are deaf. When treatment options are presented with conflicting messages, a dilemma is created for the individual seeking solutions, working against adoption of potentially valuable rehabilitation recommendations. As an active participant, the adult client must be involved in assessing all potential outcomes and benefits, based on best current knowledge in the field.