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Stigma: What Does the Literature Say?

Wallhagen, Margaret, PhD

doi: 10.1097/01.HJ.0000546262.69563.c5
Special Section: Stigma and Hearing Loss

Dr. Wallhagen is a professor of gerontological nursing at the University of California in San Francisco, CA. She studies hearing loss in the contexts of health care settings, dyadic relationships, and serious illness.

The concept of “stigma” has a very long history, but it is almost always associated with characteristics, qualities, or behaviors that are devalued. As such, the term is ubiquitous in the literature on hearing loss and hearing aids, usually in relation to factors that influence whether individuals access hearing health care and use hearing aids (HAs) or other assistive devices. Exploring how stigma influences decision-making related to hearing health care has implications for designing interventions and approaching counseling in the clinical setting. This brief summary reviews select articles on what is currently known about stigma and its influence on hearing health-seeking behaviors, including the purchase and use of hearing assistive technology. Clinical implications and directions for future research are briefly noted.

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CLASSIFYING STIGMA

As a caveat, although commonly used, the term “stigma” is not clearly defined or theoretically grounded in much of the research. When research focuses specifically on stigma as a concept, different terms are used to imply similar ideas or categorize the types of stigma. For example, Williams and Cohen, in this issue of The Hearing Journal, differentiate between “internal sigma,” those messages we give ourselves, and “external stigma,” those messages we get from the environment (Hearing Journal. 2018;70(9):pp). On the other hand, Southall and colleagues use the terms “public stigma” and “self-stigma” to indicate similar ideas (In: Montano and Spitzer, eds. Plural Pub, 2013.). In their extensive synthesis of literature, David and Werner refer red to public and self-stigma but noted the additional category of “courtesy stigma,” or the way individuals react in relation to people associated with the stigmatized person (Stigma and Health. 2016;1(2):59).

While these broad categories are noted, much of the literature focuses on what can be considered “internal” or “self-stigma,” although “stigma” as an individual concept is not necessarily the primary focus of the study. That is, stigma appears as one of the many factors associated with acceptance of hearing loss, help-seeking, and use of hearing aids. There is also variability in the way self-stigma is further divided,although these subcategorizations tend to focus on the cognitive attributes assigned to hearing loss, the emotional reactions to such a loss, and the behaviors manifested by an individual with hearing loss. Unfortunately, the variability in terminology as well as the variability in research focus make comparisons across studies more difficult. Overall, however, the general consensus remains that stigma affects access to and use of hearing health care in multiple adverse ways.

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HEARING LOSS AND STIGMA

Although the literature related to stigma goes back decades, David and Werner carried out a scoping review of articles published on stigma as it relates to hearing loss and hearing aids published between 1982 and 2014 (Stigma and Health. 2016). Their inclusion criteria included studies that focused on older adults. Out of the 21 manuscripts finally selected for review, almost half (9) focused specifically on self-stigma, six addressed public stigma, three focused on both public stigma and self-stigma, two addressed self-stigma and courtesy stigma, and one looked at public stigma and courtesy stigma. Most of the studies reviewed were qualitative/descriptive in nature, and were noted to lack any theoretical framework.

Interestingly, while the number of papers published each year increased, the findings appeared to remain fairly consistent, with the size and visibility of hearing aids identified as the features most associated with resistance to hearing aid use and concealing the hearing loss as the primary behavioral strategy used in response to the perceived stigma. Furthermore, the researchers acknowledged that although the publications spanned a long period that saw major changes and development in hearing technology, the uptake and use of hearing aids remained relatively low. In their conclusion, they emphasized the need for more theoretically-based and empirically rigorous research to gain a better understanding of stigma and its impact.

Perhaps as a result of the rising number of studies conducted over the years and their generally consistent findings, other reviews and metasynthesis articles that focused on slightly different issues and methods were published around the same time as the review by David and Werner. Barker, et al., did a metasynthesis of qualitative literature that explored issues related to both the person with hearing loss and his or her communication partner (Int J Audiol. 2017;56(5):297). Their review of 12 papers that met their inclusion criteria further supported the impact of hearing loss on individuals, including the impact of hearing loss on their self-identity and the effects of stigma on hearing aid use, as well as the impact of hearing loss on their communication partner and their relationship. The dynamic nature of these interactions and the varying perspectives of a situation remain an important issue in terms of relationships (J Am Acad Audiol. 2015;26(2):15). Not surprisingly, Barker and colleagues found that both partners benefitted when the individual's and his or her communication partner's coping strategies were aligned.

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HEARING LOSS AND HEALTH DISPARITIES

Barnett and colleagues also performed a systematic review but focused on disparities and their resulting impact on access and use of rehabilitative services (Laryngoscope. 2017;127(5):1187). They included articles that reported data on motivators, barriers, and compliance factors for individuals over 18 years old. Each area was affected by multiple factors. For example, motivators that promoted help-seeking included the degree and self-recognition of hearing loss, self-efficacy, and family support, while barriers included financial limitations, inconvenience, competing chronic health problems, and unrealistic expectations as well as the stigma associated with the hearing device. Compliance was found to be most affected by self-efficacy, education level, and engagement in the rehabilitation process. The findings were consistent with those of other similar studies and supported the fact that stigma is one of the many factors that affect access and use of health services.

The disparities in the access to and use of hearing health care service were also supported recently by McKee and colleagues who, using the Health and Retirement Study data, found that younger, non-white, non-Hispanic, lower income, and less-educated individuals were significantly less likely to use hearing aids than their referent groups (Gerontologist. 2018 May 21. doi: 10.1093/geront/gny051). The researchers also noted that stigma came up as a barrier during a smaller qualitative subcomponent, and reported that this was “especially palpable” among the black participants. However, the small numbers included in this analysis do not allow conclusions to be drawn about whether stigma differed across racial or ethnic groups. In addition, Clements, in a literature review on why individuals delay seeking treatment, added another factor: Interactions with the hearing health care provider (J Otolaryngol ENT Res. 2015;3(4):00070). Such interactions were noted to either support continued engagement once contact was made or cause the individual to stop seeking care. Such interactions might actually contribute to self-stigma rather than minimize its significance (Gerontologist. 2010 Feb;50(1):66). Unfortunately, we currently do not have a good theoretical framework to guide our understanding of how these various factors interact with each other.

The one article that viewed hearing loss from a lifespan and healthy aging perspective suggested that the World Health Organization's International Classification of Functioning and Disability provided a framework for how hearing loss, like other health conditions, could be understood within a broader bio-psycho-social-environmental context (Gerontologist. 2016;56 Suppl 2:S256). Although the factors discussed in this article were similar to those presented in other studies, including the impact of stigma, the authors integrated the importance of early life events and experiences in relation to the experience of hearing loss. They also placed hearing loss within a global context, which is valuable as cross-national studies can highlight how culture influences stigma.

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HEARING LOSS AND CULTURE

Along these lines, Zhao, et al., performed a literature review on the influence of culture on people's understanding of hearing help-seeking and hearing aid uptake (Int J Audiol. 2015;54(7):435). Of note is their discussion of four theoretical approaches that have been used or could be used to analyze cross-cultural influences on health behavior: (1) theory of social recognition, (2) theory of stigma, (3) theory of social representation, and (4) theory of planned behavior. Each theory could be used to explain the same behaviors but from a different perspective, suggesting the potential value of reframing the discussion of stigma using a different theoretical (and potentially less-threatening-to-self) perspective. In addition, under the theory of stigma, they noted: “In all local moral orders there are stigmatizing reactions. Some reactions are generic (i.e., exist in all types of local moral orders), but some are specific for certain local moral orders (e.g., using a hearing aid in the local moral order of older male industrial workers is quite different to being a young female hearing-aid user working as a teacher).” This, again, highlights the dynamic nature of the person-environment interaction that occurs when experiencing hearing loss.

Overall, findings across studies are fairly consistent: Stigma remains an important issue that needs to be considered within the context of multiple interacting factors. The increase in metasyntheses of existing research may also be related to the lack of an overarching theoretical framework that can capture the full meaning and extent of the concept of stigma within the dynamic interplay that occurs in the trajectory of an individual's hearing loss. Additional inter-professional research is needed to begin to develop such a model. There is also a need to refine quantitative assessments of stigma as it relates to hearing loss and hearing aids. Meanwhile, from a clinical perspective, data support the use of the strategies outlined by Williams and Cohen in this issue of The Hearing Journal to involve close family members, clarify values and goals, build relationships, and consider cultural influences to minimize stigma and promote hearing health.

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