audiologists view this hearing loss as a disorder and/or disease with a focus on the anatomy and physiology of the auditory system. Thus, audiologists tend to rely on the audiogram peppered with jargon to explain the hearing impairment, frequently saturating the dialogue with information about hearing aids and assistive devices without taking into account the individual’s concerns, feelings of vulnerability, identity, and self-perception (Gregory, 2013). By incorporating the individual’s story into the audiologic rehabilitation plan, the audiologist can provide the kind of care most appropriate, helpful, and satisfying.
The narrative begins when we ask the individual with hearing loss, “What brought you here?” Asking the client this question allows the individual to ponder and reflect on the possible impact of their hearing loss in various environments (e.g., theatre, restaurants, at meetings, lectures, work, in larger groups with multiple conversations, watching television, on the telephone) and on their self-image, and quality of life. This question also begins the formation of a partnership between provider and client; the provider is attentively listening to absorb and interpret the client’s story, leading to improved service delivery and satisfaction. The act of attentive listening demonstrates care and the valuing of the individual’s wellbeing, enabling the provider to address and provide the necessary rehabilitation practices tailored to the individual’s needs.
This client-centered approach is a preferred practice model in adult audiologic rehabilitation (DiLollo, 2014; DiLollo & DiLollo, 2014; Gagne & Jennings, 2011; Grenness, Hickson, Laplante-Lévesque, & Davidson, 2014a, 2014b). The narrative can be expanded to include family members and communication partners by asking, “What is the effect of your spouse’s/parent’s/grandparent’s/friend’s hearing loss on you?” Hearing loss often has an impact on the entire family and communication partners. This expansion of the narrative viewpoint is consistent with the current family-centered approach, which is to engage significant others in the audiologic rehabilitation process (Hickson et al., 2016; Montano, 2018; Singh et al., 2016).
In addition to incorporating patient narratives in the therapeutic process (Crowell, Hanenburg, & Gilbertson, 2009; DiLollo, 2014; DiLollo & DiLollo, 2014), exploring alternative forms of text media, such as memoirs, nonfiction, fiction, graphic novels, poems, quotes, films, documentaries, plays, YouTube videos, and TED Talks may help individuals, family members, significant others, and audiologists to empathize, recognize, reframe, and reflect on the influence of the hearing impairment on communication and quality of life. This chapter will address the role of narratives and text media in the adult audiologic rehabilitation process and educational practices as well as provide potentially useful resources, found in the References and Appendix 17–A.
Narrative Competence and Components
Hearing loss is chronic and isolating. To treat effectively, the audiologist must learn as much as possible about the impact of the hearing loss on the individual, family, and significant others (Meyer, Scarinci, Ryan, & Hickson, 2015; Scarinci, Meyer, Ekberg, & Hickson, 2013). Incorporating narratives in audiologic rehabilitation practice challenges the narrow “medical model” often used. The medical model (Barnes, 1997) positions individuals with disability as having a problem or impairment whose solution or cure is dependent upon the medical community. This model is often characterized by a kind of “colonizing listening” that has traditionally organized the health practitioner-patient/client relationship in which individuals with disability are positioned as listeners and clinicians are positioned as experts (Goggin, 2009).
In contrast, narrative medicine prioritizes the patient’s experience through the clinician’s attention to the details of the story and the clinician’s subsequent affiliative practice (Charon, 2004). The “telling” of the time course of the hearing loss, tone of voice, word choice, body language, facial expressions, and gestures used by the individual and family members all help to increase the audiologist’s understanding of the influence of the deficit on their communication and quality of life. Narratives of older adults, for example, have demonstrated that because hearing loss is considered a natural part of the aging process, they are less likely to seek or accept hearing aids when they begin struggling to hear. Instead, older adults wait until they feel their hearing loss has a negative impact on their relationships and their sense of who they are as a person to readily use assistive listening devices (Espmark & Scherman, 2003). Middle-age women with moderate hearing loss tend to have a different experience and therefore different needs; where their male peers tend to feel sad about hearing loss, women, who are often tasked with maintaining relationships and caring for children and elder adults, generally express worry as their primary concern. In such cases group rehabilitation and the sharing of experience can be an effective modality (Jonsson & Hedelin, 2018). Successfully employing narratives in practice endows clinicians with “the ability to acknowledge, absorb, interpret, and act on the stories and plights of others” (Charon, 2001b, p. 1897). Without hearing the individual’s, family members’, and/or significant others’ story, treatment will be limited, incomplete, and ultimately diminished in effectiveness.
In addition to telling their own story, reading others’ narratives can also be beneficial to the individual, family, and audiologist. For example, Kooser (2014), a clinical social worker, writes of her experience with progressive hearing loss that ultimately resulted in her receiving a cochlear implant as an adult. She not only shares her journey and personal encounters, but also offers therapeutic and counseling strategies for the professional to consider. As narratives are personal reflections, someone with a progressive hearing loss will have a different narrative than someone with a sudden, gradual, or age-related hearing loss. The offering of these stories would most likely be specific or similar to the client’s type and onset of hearing loss.
As narratives give meaning to lives, shape behaviors, and organize one’s sense of self (DiLollo & DiLollo, 2014), engagement with narratives is beneficial for clinicians, individuals with hearing loss, family members, and significant others of those with hearing loss. To develop narrative competence, the audiologist must first attend, suspend judgement, tolerate ambiguity of multiple perspectives, and “recognize, absorb, interpret, and be moved by the stories one hears or reads” (Charon, 2004, p. 863). The ability to attend demands the audiologist be free of distractions, personal thoughts, feeling, and beliefs (Charon, 2005). As soon as the professional begins to form an opinion, listening has stopped. With careful attention, audiologists can gather a more accurate representation of the client’s, the family’s, and/or significant others’ perspectives and beliefs. What follows from attention and representation is affiliation, where empathy and partnerships between audiologists and the client, their family, and significant others begin (Charon, 2005).
Framework and Strategies for Incorporating Narratives in Adult Audiologic Practices
The purpose of the narrative is to assist the individual to expand, reconstruct, and/or reframe their “dominant” story; that is, in this case, the story of their hearing loss. While the audiologist is the technical expert on hearing loss, the individual is the expert regarding their experience. Thus, the audiologist must communicate openness and acceptance, being mindful that the individual’s narrative may be limited and narrow. For some adults, while the major component of the narrative may be hearing loss, the goal is to encourage those individuals to include additional personal attributes that may affect their adjustment. A significant number of adults with hearing loss, however, have not fully identified issues and often see an audiologist to appease their spouse or other family members. For these individuals, the goal is also to explore and expand their dominant story, to reframe and reconstruct their narrative, and to accept that their hearing loss is one attribute of their personhood. In other words, adults with hearing loss often provide “thin” descriptions due to limited examination of their beliefs, stereotypes, and expectations (e.g., aging). Broadening or “thickening” these descriptions invites the individual to reexamine their beliefs, stereotypes, and expectations to construct an alternative and richer narrative that more accurately represents the complexity of their life experiences (DiLollo & DiLollo, 2014; Wolter, DiLollo, & Apel, 2006).
The audiologist accomplishes this by listening for contradictions (e.g., “I can’t hear so I don’t bother anymore” followed by “They mumble”) and the “voice” of others in the prevailing narrative (McKenzie & Monk, 1997; Wolter et al., 2006). To help the individual reframe their narrative and make meaning of their experiences, the following three steps have been shown to be effective (White & Epston, 1990; Wolter et al., 2006).
■ First, the individual is asked to externalize and detach from the hearing impairment by giving it a name that provides specific meaning to them. For example, the name could be the problem (e.g., hearing loss) or feeling (e.g., frustration, irritation, annoyance). By giving the problem a name, the individual can focus and gain a sense of control. Once an appropriate name is used to identify the problem (e.g., hearing loss), the audiologist then refers to the hearing loss in the third person. The audiologist might state, “It sounds like the hearing loss prevented you from enjoying the play.” This enables the individual to separate the problem from themselves and facilitate a new perspective (Wolter et al., 2006). In other words, the hearing loss is “personified and becomes the entity in itself” (Wolter et al., 2006, p. 171).
■ Second, the individual is asked to provide a comprehensive description of the impact of the hearing loss, the problem, to map its influence. For example, ask the patient, “Describe how the hearing loss prevented you from . . .” The objective is to assist the client to externalize, separate from, and gain control of the hearing impairment rather than the other way around.
■ Third, recognition of the influence of the hearing loss on their participation in activities and social encounters, and its negative effects on their quality of life, allows the individual to reflect on, take better control of, and imagine possibilities for different outcomes. This stage is a reconstruction of their story and represents the person’s response to and influence on the effect of the hearing loss on them (White & Epston, 1990; Wolter et al., 2006). For example, ask the client to reflect on a time when they were able to lessen the impact, overcome it, or prevent their hearing loss from dominating the communication experience. The individual is asked to reflect on this “alternative” narrative to empower and reconstruct their story and capitalize on their strengths (Wolter et al., 2006).
Eliciting a Narrative
Several additional strategies have been shown to increase practitioner competence; that is, the ability to elicit, attend, interpret, and coconstruct the client’s narrative (Charon, 2006; Greenhalgh & Hurwitz, 1998; Peterkin, 2012). Investing in eliciting the client’s story at the beginning of the process can save time later.
■ Ask and/or present open-ended questions and statements to allow the individual to present his/her concerns and perceptions (Charon, 2006; Peterkin, 2012). Some examples of open-ended questions include: “What brought you here?”; “Can you describe the situations and environments when the hearing loss is most limiting?”; “Can you tell me how you currently cope with your hearing loss and the strategies you use?”; “Can you share with me some of your feelings concerning your hearing loss?”; “Can you share with me the impact of your hearing loss on members of your family, significant others, and coworkers?”; “Can you describe how this hearing deficit has changed your participation in activities or your self-image?”; “How would others describe you?”; and “Please tell me what you think I should know about you and your hearing deficit.”
■ Attend carefully not only to the individual’s words, but also their body language, facial expressions, and tone of voice. Attention by the audiologist includes a relaxed body position, not sitting behind a desk, a head nod, a verbal acknowledgment, rephrasing what the client said to be sure you understood correctly (e.g., “I heard this . . . Did I hear correctly? Is that what you meant?”).
■ Ask the client and family members/significant others to write a brief one-page document on the impact of the hearing deficit on them. This activity opens an opportunity for dialogue and perspective taking. The individual with the hearing deficit may have limited or no knowledge of its effect on important people in their life.
■ Remember the hearing loss is but one attribute of the client. Find out your client’s interests (e.g., hobbies, travel, film, theatre, books, etc.) and their family (e.g., spouse, siblings, children, grandchildren).
■ Be alert to recurring themes, key words, and metaphors that emerge in your communications. They can be useful in reconstructing their narrative.
■ Reflect on your exchange with the client. Use a parallel chart (Charon, 2006), separate from the client’s official medical chart, to record your thoughts and feelings that emerge, increase empathy, promote deeper understanding of the client’s issues and beliefs, and obtain patient information, leading to a more competent practitioner.
■ Be mindful of your body language, posture (relaxed or tense), and facial expressions. This also includes chair placement (e.g., sitting behind a desk), interruptions, and distractions.
■ Be mindful of your own beliefs, values, assumptions, and stereotypes that are often subconscious and unexamined.
Narratives Written by Health Practitioners
Although some health practitioners, such as nurses, medical students, and physicians, have written narratives about their practice to describe the emotional and personal aspects of patient care, this form of prose is extremely limited or nonexistent in audiology. The exploration of one’s beliefs, values, biases, and self-awareness is a reflective activity (Verghese, 2001) necessary to listen and hear what the client is saying. The act of writing and reading one’s personal narrative can help the graduate student or audiologist better empathize with their client as well as other health care practitioners. Profession-based narratives may also lead to an increase in career satisfaction and less burnout, and should be considered as an element of graduate education in audiology. Finally, audiology is a profession with expected knowledge, skills, and ethical standards. Participating in interprofession-based narratives with one’s colleagues can increase awareness of shared common goals for the patient/client and reduce the isolation and disconnect that often occurs in service delivery (Charon, 2001a).
Types of narratives written by health practitioners (Charon, 2001a) include fiction (Verghese,2001; Williams, 1984), books and essays specifically written for the lay public (Gawande, 2002; Groopman, 2007), autobiography and memoirs (Kalanithi, 2016; Nuland, 2008), narrative medical practice stories featured in medical journals (Health Affairs, Annals of Internal Medicine, and Journal of the American Medical Association), and medical training experiences (Branch, Pels, Lawrence, & Arky, 1993; Klass, 1992; Reifler, 1996). However, none of these venues explores the clinical experience of audiologic rehabilitation.
The ethics of medical narratives bear consideration and are genre specific. Clearly, permission and consent from the patient/client is required if the narrative is to be considered for publication. If, however, the narrative written about the patient/client, is composed of private ruminations for the intent to clarify thoughts and to improve care, disclosure is unnecessary (Charon, 2001a). Thus, having the client write their initial, thin narrative followed by their thicker narrative as a result of reflection and reexamination for their own use and to provide better care would not require consent.
Text Media: Form and Function
There are various forms of text media that may resonate with and provide new ways of thinking about hearing loss for the individual, family members, significant others, and the clinician providing adult audiologic rehabilitation services. Thus, carefully selected and appropriate text media used in conjunction with personal narratives can assist in the representation and expansion of the client’s voice.
Representation is a mechanism by which meaning is constructed in a culture (Hall, 1997). It is not just the process of reflecting on what one knows, what one has heard, nor is it simply the process of presenting something anew. Through our oral, written, and visual languages, we make meaning of our world, forge cultural understandings of concepts, and render certain ideologies common sense. It is through our production of and engagement with representations of hearing loss and deafness that a shared cultural understanding of these disabilities is created (Quinlan & Bates, 2009; Schuchman, 1988). The distinction between the medical and social models of disability elucidates the constructive nature of representation.
When represented through the medical model, adult hearing loss and deafness appears as an individual problem needing an individual solution (Goggin & Newell, 2003) and may increase patients’ feelings of isolation (Norden, 1994). In contrast, when represented through the social model, the focus of hearing impairment turns to the social and cultural barriers that constrict full participation in public life (Altman, 2001). In this model, the experience of living with hearing loss and deafness shares the spotlight with clinical expertise and experience and is thus compatible and congruent with incorporating narratives and text media in adult audiologic rehabilitation practices.
Films, television shows, songs, graphic novels, memoirs, blogs, and other forms of media do not simply reflect experiences of hearing loss, but also structure cultural understanding and social practices. It has been demonstrated that media portrayals shape our perceptions of disability as well as affect the self-identities of individuals with disabilities both positively and negatively (Zhang & Haller, 2013). Therefore, media narratives can provide individuals, family members, significant others, and audiologists new and alternative ways of thinking about hearing loss as well as motivate them to challenge inaccurate or negative representations of this deficit and audiologic rehabilitation. Moreover, representations as tools that shape cultural perceptions can have an impact on health policy and access to resources (Garland-Thomson, 2005). For instance, narratives that portray hearing loss as a humorous and laughable part of the natural aging process may create a society in which less social pressure is applied to government and insurance companies to cover the costs of hearing aids and other assistive devices.
Films such as Music Within (Sawalich, 2007), which narrates the experience of the disability activist Richard Pimentel, a veteran whose deafness was a result of his combat duty, may lead to awareness, advocacy and, ultimately, material resources for individuals with disabilities. Media narratives of hearing loss may also lead individuals to consult with audiologists. In the television series Switched at Birth (Weiss, 2011–2017), Cameron, a Deaf man who has a Deaf teenage son, Emmett, decides to obtain a cochlear implant while Emmett declines the technology for himself. In the scenes that follow, the audiologist is depicted not only as a clinical expert but also as a partner in the family dynamic surrounding this decision; likewise, the technology is portrayed as life changing for a Deaf adult but not without its challenges. This positive representation of the audiologist-patient-family relationship may reduce concerns of adults who are reluctant to seek audiologic care.
Television has often been effective in delivering health information, and viewers frequently approach their health care professionals about information and treatments they have seen on fictional television (Brodie et al., 2001). In fact, since audiences tend to trust medical information on fictional television more than documentary sources (Davin, 2004), audiologists may consider using media narratives to share information or start conversations with clients.
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