Kris English, PhD

Professor Emeritus

The University of Akron

“Nothing About Me Without Me”

For more than 20 years, patient-centered care (PCC) has been defined by the slogan “Nothing about me without me” (Quinlan, 2018). These five words represent years of effort by a grass-roots movement that demanded an end to a “doctor knows best” culture and the establishment of an informed and participatory role for patients.

The Institute of Medicine (2001) has defined patient-centeredness as “Care that is respectful and responsive to individual patient preferences, needs and values, ensuring patient values guide all clinical decisions” (p. 3)  Patient preferences, patient values: we can usually glean these perspectives during our intake consultations, but how do we use them to guide clinical decisions?  This question brings us to a feature of PCC called shared decision-making, defined as “the conversation that happens between a patient and their healthcare professional to reach a health care choice together.” These conversations require advanced counseling skills: active listening, empathy, respect for patient autonomy, a willingness to share control, the ability to find common ground.

Not Yet a Practice Norm in Audiology

Based on our literature to date, shared decision-making (SDM) is almost an orphan topic, although a few tools – decision aids – have been developed to guide balanced discussions through hearing care options and choices (e.g., Laplante-Lévesque et al., 2010; Pryce et al., 2018). While the profession continues to explore SDM, we need to appreciate now how this process can drastically change our clinical conversations.

On the surface, SDM seems straightforward. As described by Alston et al. (2014):

• The clinician shares information with the patient about test results and treatment options
• The patient explores and shares with the clinician his/her preferences regarding these options, and
• After discussion, clinician and patient reach a mutual decision about subsequent treatment.

This template assumes the clinician welcomes and supports SDM. Unfortunately, our available evidence suggests this assumption is not a given (e.g., Ekberg et al, 2015; Grenness et al., 2015). Our limited research has also only focused on decisions related to hearing aid acceptance and options. However, there are other SDM opportunities in an audiology appointment, and these could be easily overlooked.

Example: SDM and HA Orientation

Consider the moment when hearing aids are first fitted. If only from habit, our interactions could disregard patients as decision-makers and rely on directives and advice-giving.  For example:

A student exercise: How do these comments differ? How might a patient respond/react to each, and why? What counseling/communication skills do you recognize? These essays provide some relevant background:

• Audiology counseling and patient-centered care, Part 4/5: Common ground
• From person-centered moments to person-centered culture
• Counseling thyself: “Did I really say that?”
• Balancing power in patient relationships

Conclusion

The point of the slogan “Nothing about me without me” is to include the patient in every decision, not just the obvious one (for audiology) regarding amplification. Ultimately, each patient is “an autonomous decision-maker” (Pryce et al., 2018, p. 638); if patients do not participate in hearing aid management decisions, they may decide to do nothing. Even without decision aids, we can use counseling skills to develop shared decisions now.

Acknowledgement: My appreciation to Ida Institute for sharing helpful materials.

References

Alston, C. et al. (2014). Shared decision-making strategies for best care: Patient decision aids. Institute of Medicine.

Ekberg, K., Grenness, C., & Hickson, L. (2015). Addressing patients’ social concerns regarding hearing aids within audiology appointments for older adults. American Journal of Audiology, 23, 337-350.

Institute of Medicine. (2001). Crossing The Quality Chasm: A New Health System For The 21st Century. National Academies Press, Washington, DC.

Grenness, C., Hickson, L., Laplante-Lévesque, A., Meyer, C., & Davidson, B. (2015).  The nature of communication throughout diagnosis and management planning in initial audiologic rehabilitation consultations. Journal of American Academy of Audiology, 26(1), 36-50.

Laplante-Lévesque, A. et al. (2010). Factors influencing rehabilitation decisions of adults with acquired hearing impairment. International Journal of Audiology, 49, 497-507.

Pryce H. et al. (2018). Shared decision-making in tinnitus care – An exploration of clinical encounters. British Journal of Health Psychology, 23, 630-645.

Quinlan, C. (2018, April 25). “Nothing about me without me”—20 years later.  Retrieved May 12, 2019.

David Luterman, D.Ed.

Professor Emeritus

Emerson College, Boston MA

The American Speech-Language-Hearing Association (2018) has delineated two aspects of counseling as within the scope of practice of audiologists: information and personal adjustment. The information aspect of counseling is relatively easy for audiologists to manage as it fits comfortably within the medical model of service delivery and also fits the expectation of clients.

The personal adjustment aspect, on the other hand, often presents difficulty; it means encountering clients on a psychosocial level involving their emotions and in this realm, audiologists often feel a lack of training (Meibos et al., 2017). The discomfort in psychosocial counseling is reflected in several studies: Ekberg, Grenness, and Hickson (2014) analyzed the clinical interactions between audiologists and 63 elderly hearing aid clients. They found that audiologists did not address the clients’ social and emotional needs but continued in content based communication. Cienkowski and Saunders (2013) examined the communication of audiologists during hearing aid fittings, and found that over 66% of the communication was content based. They also concluded that clients would benefit greatly if audiologists became more comfortable with personal adjustment counseling.

“Whole Person Care”

mind + heart

In actual practice, however, there should be no distinction between the informational aspect of counseling and the emotional component. There is considerable research evidence indicating that clients do not retain much content after a diagnostic evaluation (Margolis,2004; Martin, 1990) and the reason for the low retention of content is directly related to their anxiety level (Kessels, 2003). We know this on an experiential level: when we are emotionally upset, our cognitive ability becomes limited. Our brain goes into fight or flight mode and if we try to read something we can read the words, but they do not connect in the brain; we are essentially in our right brain. What this means: if we do not address the emotions of our clients, then information will not be processed. Therefore, to be effective as clinicians, we need to address both content and personal adjustment.

Personal adjustment counseling is often not addressed because it is lacking in training programs (Wicker et al., 2018), and it feels professionally risky to practicing audiologists because there is a lack of structure and no clear guidelines. The primary experience of our clients is grief. They have lost the life they thought they would have, and this is a painful loss. At heart we need to be grief counselors.

In emotion based counseling, clients’ primary need is to be listened to non-judgmentally, not made to feel better. This is a hard concept for professionals to acquire, as our assumed  mandate is to fix, and in the personal adjustment realm the fix is not apparent. Our clients are not emotionally disturbed; they are emotionally upset, which is appropriate to their life situation. The conventional response to someone who is upset is to try to make them feel better. The two favorite strategies are to instill hope (“Cochlear implants will make him normal”) or use positive comparisons (“It could be worse. He could have cancer, be deafer, etc.”).

Neither strategy is effective because it invalidates the client’s emotional pain. Now they feel guilty because they are still upset, and their feeling are stifled. We need to give our clients permission to grieve by listening to them and validating their feelings. We are not putting the feelings in, just giving them permission to be expressed and validated. The notion we need to convey to our clients is that feelings just are; you never have to be responsible for how you feel. Behavior which stems from feelings can be judged as self-enhancing or not. This notion builds in emotional safety for our clients, giving them the permission to express their deep and painful feelings. We have to do nothing but listen and validate and not try to fix or cheer up. I have found that clients self-limit in their emotional expression, and they have their own capacity to make themselves feel better. Embracing painful feelings is the first step in healing. And when this begins to occur, emotions settle down and clients can begin to absorb information.  We cannot damage clients by listening and validating their feelings. Giving them information when they are not ready for it can be overwhelming and often diminishes their self-esteem.

Boundaries and Referrals

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Kris English, PhD

Professor Emeritus

The University of Akron

Audiologists observe the impact of stigma on hearing loss (HL stigma) on a regular basis, and yet we haven’t addressed it much as a counseling issue.  HL stigma can be a complicated experience: for many patients, developing hearing loss can itself be stigmatic (associated with negative stereotypes of aging). And as we know, the added prospect of hearing aids can compound the stigma further. Recent research (David et al. 2018) supports this long-standing observation: that hearing aids can be “central to the stigmatic experience,” which is why we need to attend to “the importance of these devices for psychological wellbeing” (p. 133).

From a counseling perspective, we have to acknowledge that HL stigma has negative power and should be addressed. Stigma has been consistently found to impede help-seeking (e.g., Gagné et al., 2011; Heijnders & van der Meij, 2006; Wallhagen, 2009), so our challenge is to address it openly and therapeutically. This article will provide a basic background regarding the development of stigma, and suggestions on how to address stigma in clinic.

Stigma Develops in Stages

Corrigan et al. (2006) describe stigma development as a socially-constructed three-stage process:

1st stage: Stereotype Awareness, wherein we are aware of society’s negative beliefs about a health condition or disability: My grandmother says all of her friends are losing their hearing. She says they always seem confused, and she doesn’t enjoy their company anymore.

2nd stage: Stereotype Agreement, wherein we concur and endorse these negative beliefs, developing our own prejudice: When I visited my grandmother, I could see why she doesn’t enjoy her friends these days. They are in their own world and have no idea what anyone else is talking about.

3rd stage: Self-Congruence or Self-Stigma, wherein we internalize society’s negative attitudes and apply them to ourselves, risking adverse effects on self-concept and personhood: I am having the same hearing problem my grandmother used to complain about.  It’s so humiliating.

The final stage – self-stigma – includes self-rejection, a belief in a diminished self, and shame, wherein an individual feels “disqualified from full social acceptance” (Goffman, 1963, p. 9). Weiss et al. (2006) describes self-stigma as a “hidden burden” – our challenge is to help patients discuss that burden and perhaps free oneself from it.

Rosenstock, 1974

Our take-away: as described above, stigma is a belief, which in itself presents a challenge. Because of our scientific base, audiologists don’t pay much attention to beliefs, but we should. After all, common objections to hearing devices – the impact on self-image and self-identity, cosmetic sensitivity, the certainty of social rejection – are beliefs, not facts.  We may be familiar with The Health Belief Model (Rosenstock, 1974), created as a means to predict health-promoting behaviors (e.g., Saunders et al., 2013), but it has yet to impact clinical practices.

Preparing Ourselves

Before we respond to a patient’s perception of stigma, we must be comfortable talking about it. For instance, we may worry about the “elephant in the room” phenomenon: should we “go there?”  We may think that talking about it will increase a patient’s self-stigma, yet if we don’t talk about it, we can be fairly sure it will not resolve on its own.

As applied to audiologic counseling, we aim to help patients consider changing their negative beliefs about hearing loss and hearing help (Clark & English, 2019). Consider the following dialogue: how did the audiologist help the patient transcend stigma and move forward?

A Self-Stigma Conversation

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Kris English, PhD

Professor Emeritus

The University of Akron

We all know that childhood bullying is nothing new.  However, we now also know a great deal about the long-lasting effects of bullying victimization. Longitudinal cohort studies indicate that children with a history of being bullied are at increased risk for overall mental and physical health problems, anxiety, depression, and self-harm — toxic stress responses that extend far into adulthood (Copeland et al., 2013; Lereya et al., 2015).

The U.S. Department of Education (2011) has identified bullying as a public health/public safety issue, and Takizawa et al. (2014) have framed it in the clearest possible language: “Victimization by bullies is increasingly considered alongside maltreatment and neglect as a form of childhood abuse” (p. 777).  Excuses such as “kids will be kids” and “bullying is just a rite of passage” can no longer be tolerated.

As part of a child’s support system, we must understand that children who are being bullied might hesitate to ask for help, for a variety of reasons: embarrassment, fear of retribution, or worry that adults will make the situation worse. They may not even be sure of the difference between “tattling” (which they’ve been taught they should not do) and telling an adult about being bullied. Bauman and Pero (2010) unsurprisingly found that children with hearing loss were just as likely as other children to “not tell.”

Rather than wait for a child to disclose a problem, the American Academy of Pediatrics (AAP) (2009, 2017) adopted a policy to routinely screen for bullying concerns as a standard of care. Squires and colleagues (2013) have advocated for audiologists to assume the same responsibility. But how to broach this sensitive subject?

First, Do Our Homework

We should not screen for bullying until we have some basic information:

⇒ Review StopBullying.Gov for important information on “red flags,” at-risk children, cyberbullying, a child’s legal rights to a safe environment at school (Norlin, 2015), and bullying concerns outside of school.

⇒ Learn local laws and policies re: anti-bullying programs in the child’s school, and communicate with school administration when possible.

⇒ Develop a support team at your setting, and ensure you are ready for “next steps” should a child disclose a concern, including self-harm.  We should not screen until we are comfortable with the unpredictable nature of the subsequent conversation.

A Screening Conversation

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John Greer Clark, PhD

Professor, University of Cincinnati, OH

Audiologists must always be prepared to view their patients in a context wider than the immediate condition for which they may be seen. One of the seven primary components of person-centered care in audiologic practice is that of a holistic outlook for patients which dictates “a continued vigil for the safety and well-being of those served both within the clinic and within the patient’s broader life context” (Clark & English, 2019, p. 5).  Both hearing loss and dementia can have negative impacts on patients’ emotional well-being, psychological status, and societal and family interactions.  The incidence of dementia increases with advancing age, as does presbycusis, presenting significant challenges to the audiologist when these conditions coexist (Cacace, 2007).

Hearing loss is one of the noted modifiable risk factors for dementia (Livingston et al., 2017), and if identified and treated early, its impact on dementia may be lessened (Beck et al., 2018).  Similarly, early detection of dementia has the potential to lessen the negative impact of hearing loss on one’s quality of life.

Broaching the Subject

One means of broaching the subject of possible cognitive decline with patients is to include inquiry of concern within the case history (Amero et al., 2017).  The following scenario depicts how to segue into a discussion about screening.

While reviewing case history information with Mr. Baxter and his wife, Dr. Collier says, “I see that you answered ‘Yes’ to the question ‘Do you or any members of your family have any concerns about memory challenges or confusion that you appear to have?’ Can you tell me a bit about your concerns?”

Mr. Baxter looks over at his wife hoping that she might respond to this topic that he tries his best not to think about.  After a brief pause, Mrs. Baxter responds, “Well we aren’t sure if it is anything really, but we have noticed that Jim seems to lose things a lot.  His glasses… keys… his watch the other day.  We all lose things, but this just seems to be so much more frequent than before. And last week he called me from the grocery parking lot.  He said he wasn’t sure if home was to the left or the right from the store.  We downsized four years ago and it used to be a right turn out of the lot, but now it’s a left turn.  We haven’t really talked to anyone about this.  Not yet, anyway.”

“Well, you are correct,”Dr. Collier says.  “We all do forget things and lose things, even lose our direction sometimes.  But what you are saying does seem to make one pause.” Turning to Mr. Baxter, she continues,“Would you be willing to have me give you a brief screening to see if we should be concerned?  If the results of the screening suggest that further exploration on this would be in order, I know a wonderful doctor I could recommend for you.”

(From: Clark & English, 2019, with permission)

 

And Then What?

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Kris English, PhD

The University of Akron/NOAC

In Part 1 of this series, we considered empathy as an act of “sharing space” with another’s experience and emotional state. In Part 2, we highlighted the importance of actively checking our impressions of another’s experience and state, to avoid the disconnect of “rejected empathy.”

Taking this learning process to its logical conclusion, as educators we are charged to evaluate the development of these interpersonal skills. However, to date very little has been written in audiology as to how to go about it.  Fortunately, there are several valid and reliable assessment tools (Batt-Rawden et al., 2013), including the Four Habits Coding Scheme, described and referenced below.  Before testing out the Four Habits, though, let’s consider one habit not included on this rubric, a habit that we may need to break: a tendency to try to “make things better” by saying “at least.”

“At least” … Creating Distance, Not Sharing Space

Such a seemingly innocuous phrase! And yet, consider the following comments and their impact on empathy:

• At least we can improve your hearing problems with modern technology.
• At least we identified your child’s hearing loss early.
• Lots of people have hearing loss far worse than you do (“at least” is not spoken but implied).

On the surface, our intention is commendable: to help a patient or parent feel better (Lundberg & Lundberg, 1997). However, ironically, to say or imply “at least” only makes the speaker feel better, and at the same time diminishes the patient’s experience. By offering impersonal reassurances, we inadvertently distance ourselves from our patient.  We convey access to some special knowledge, that we know more about the situation than the person experiencing it. Such distance-creating signals are inconsistent with what Carl Rogers (1979) called “the subordination of self.” Discuss!

Applications to Audiology

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Kris English, PhD

The University of Akron/NOAC

In Part 1, a vignette depicts a patient informing her physician that her spouse had recently passed away. Unfortunately, the physician assumed too much about the patient’s life and experience, and expressed empathy for a situation that didn’t exist. The patient decided to correct the physician’s assumptions, an awkward counter-response that Frankel (2017) calls “rejected empathy.” Although hypothetical, we should spend a moment imagining the rest of this scenario: once the first exchange went off the rails, the physician would hopefully apologize, clarify, and try again — still appreciated by the patient but not an optimal outcome (Derksen et al., 2017).

An Avoidable Misstep

We would never intentionally cause hurt or harm by offering empathy that a patient will need to reject, but we may find ourselves taking similar missteps. Perhaps we still think of empathy as Barrett-Lennard (1981) did when he described an “empathy cycle” consisting of three phases:

• Phase 1: the inner process of empathetic listening to another who is personally expressive in some way
• Phase 2: the attempt to convey empathetic understanding of the other person’s experience
• Phase 3: the other person’s reception or awareness of this communication

In light of Frankel’s vignette, it seems fair to say that this “empathy cycle” is incomplete. All three phases were involved, and yet the outcome was ineffective. Perhaps Barret-Lennard suspected as much, since he does point out, “There is room for considerable slippage” (p. 91).

Teaching “Checking”

When we take on the task of teaching empathy skills, we should base our instruction on the most complete definition possible.  Like Frankel, Mercer and Reynolds (2002) include the aspect of “checking for accuracy”:

1. Understand the patient’s situation, perspective, and feelings (and their attached meanings)
2. Communicate that understanding and check its accuracy (emphasis added)
3. Act on that understanding with the patient in a helpful (therapeutic) way (p. S9)

In other words, regarding #2 above, “If you don’t get that confirmation, you aren’t done” (Coulehan et al, 2001, p. 225).

Applications to Audiology

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Kris English, PhD

The University of Akron/NOAC

The concept of empathy is a foundational aspect of audiologic care – foundational but elusive. Students and instructors generally know how to define it, for example, “the ability to understand the patient’s situation, perspective and feelings, and to communicate that understanding to the patient” (emphasis added) (Coulehan et al., 2001, p. 221).

However, as is often said in counseling texts, “knowing is not enough.” Knowing a definition does not mean a skill has been acquired. How can instructors bring the concept of empathy to life, and actively support the develop of empathy through course content and clinical training?

Guidance is available in related fields. For instance, Batt-Rawden et al. (2013) provide a systematic review of methods designed to teach empathy to medical students. These methods include a range of educational interventions that effectively maintain and enhance students’ personal capacity for empathy, such as:

• Patient narratives
• Reflective essays
• Communication skills training
• Problem-based learning
• Interpersonal skills training (role-playing, standardized patients)

Applications to Audiology

For our purposes, we can start with two simple exercises on the process of “sharing space” with another. Here is a combination of reflective essay and communication skills training, for both students and instructors:

Learning objective #1: Develop “empathic understanding” (Mercer & Reynolds, 2002), or more specifically, “the passive emotional response of one individual to the emotions of another” (Batt-Rawden et al, 2013, p. 1171).

Learning activity: View this popular 4-minute video developed by the Cleveland Clinic: Empathy: The Human Connection to Patient Care.   Then, write down at least four specific scenarios that made an impact on you, and describe what the persons in those scenarios were experiencing. Include adjectives that describe emotional states. Repeat the exercise one month later; do any scenarios have a different impact than before? Again, write down your perceptions of patient and family experiences.

Learning objective #2: Demonstrate “empathetic communication” (Mercer & Reynolds, 2002); described as “an active skill that can be acquired and is amenable to nurturing” (Batt-Rawden et al.,2013, p. 1171) and “a visible communication behavior that is enacted when a clinician recognizes and responds to another person’s suffering” (emphasis added) ( Frankel, 2017, p. 2129).

Learning activity: Ask a friend or family member to view the same video, then ask for their reactions and listen carefully. Listen but do not insert your own reactions into the dialogue. Find ways to express that you are trying to understand. Provide some prompts: what else caught your attention?  Other scenarios you’d describe as important or memorable? Later, evaluate your skills: did you refrain from interrupting? Was it difficult or comfortable to “just listen”? Did you understand the other’s experiences and actively communicate that understanding at least once?

Caution: “Empathic Communication” Could Go Awry

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Kris English, PhD

The University of Akron/NOAC

Recently, a panel of pediatric audiologists asked parents for guidance in developing a Childhood Hearing Loss Question Prompt List (CHL QPL). QPLs are used in many specialties in health care to help patients and families remember the questions they want ask, suggest questions they may not have thought about asking, and broach questions they’d like to ask but don’t know how. As a counseling tool, QPLs are very effective for patient education as well as for the open invitation to discuss important or difficult topics, and to equalize the power dynamic in a health care appointment.

One Question Stands Out

The CHL Question Prompt List underwent several stages of review, and the final version can be found here.  The report on this QPL does not include a breakdown of each question and degree of support, but one result is a stand-out and is worth highlighting here: of all the questions reviewed to keep or reject, the only question that was approved by 100% of parent reviewers (N = 122) was this one:

Any unanimous response is rare, but this one really should come as no surprise: research has long reported parents’ desire to connect with other parents for support. Parents in Mueller et al.’s (2009) study valued access to other parents as a source of information and emotional support, and a sense of being in a larger family. Other benefits include gaining new skills to deal with day-to-day issues, increasing a sense of power and belonging (Law et al. 2009), and reducing stress (Hastings & Beck, 2004). Parents of children with hearing loss have specifically identified their “predominant need” as meeting other parents (Luterman & Kurtzer-White, 1999), and the provision of these support services is described as a “state-of-the-art practice in family counseling” (Jerger, Roeser, & Tobey, 2001).

What to Do With This Information?

This web forum focuses on audiology counseling, but we must recognize our limitations. We cannot help parents the same way other parents can. In addition to providing every professional support possible, we can also:

• Support a parent group in our community (provide space, communication mechanisms [newsletter, website], etc.)
• Provide parents contact information about existing groups in our community and online (e.g., Hands&Voices)
• Maintain and share a list of “veteran parents” who generously volunteer to provide one-on-one support, especially to those new to “the journey.”

Conclusion

Once again, parents have spoken. Will we act as well as listen? What can we do in our communities to meet this full-throated request for support?

References

Hastings, R., & Beck, A. (2004). Practitioner review: Stress intervention for parents of children with intellectual disabilities. Journal of Child Psychology and Psychiatry, 45(8), 1338-1349.

Jerger, S., Roeser, R., & Tobey, E. (2001). Management of hearing loss in infants: The UTD/Callier Center Position Statement. Journal of the American Academy of Audiology, 12(7), 329-336.

Law, M., King, S., Stewart, D., & King, G. (2002). The perceived effects of parent-led support groups for parents of children with disabilities. Physical and Occupational Therapy in Pediatrics, 22(2/3), 29-48

Luterman, D., & Kurtzer-White, E. (1999). Identifying hearing loss: Parents’ needs. American Journal of Audiology, 8(1), 13-18.

Mueller, T.G., Milian, M., & Lopez, M.I. (2009). Latina mothers’ views of a parent-to-parent support group in the special education system. Research and Practices for Persons with Severe Disabilities, 34(3/4), 113-122.