Kara Vasil, Class of 2016

The University of Akron/NOAC

Picture this: You are in the sound booth, right in the middle of an audiologic assessment. A few missed head turns or latent ABR waves in, you realize that maybe these parents’ fear has been realized, and their child has a hearing loss. They’ve sat in your office, putting the puzzle pieces together of the child’s birth history, medical complications, and behaviors in the home. You now have concrete evidence, in the form of behavioral testing, an ABR, OAE’s, or whatever it may be. Now it is time to break the news to these parents that their child has a hearing impairment. Whether they are expecting it or not, you, the audiologist, have a job to do.

Despite coursework in pediatrics, counseling, and aural rehabilitation, many graduate student clinicians have never been in this situation. Even when evaluating pediatric patients of all ages and walks of life, the majority have not yet concretely identified and reported to parents a permanent, sensorineural hearing loss. As many clinicians would agree, I do not believe this is a skill that can be taught solely in the classroom. Some may feel that there has been a barrier between the clinician and the parent – what is appropriate to say, and what are these parents thinking about when they leave the office and return home with their child?

Learning from the True Experts

This past semester, that barrier crumbled a bit. In a pediatric amplification course, my professor, Dr. Mark Krumm, brought in four parents of children with hearing loss. These parents were all from the local area and had met in a support group. Their children had sensorineural hearing loss of varying degrees and were treated with hearing aids and cochlear implants, technology that I consider myself quite familiar with. However, one thing I do know is that it’s not about the technology. Hearing these parents’ testimonials about their relationships with their audiologists, their children, and their families was a truly eye-opening experience. The experience reminded my entire class that the parents of our pediatric patients are trying their best and have heartfelt compassion for their kids, and, no surprise – they know their children a whole lot better than we do. These parents know what makes their children tick, they know what the technology will and will not accomplish in their home, and they also probably know their audiologist’s cell phone number for when they will inevitably need it.

The parents who visited my class talked about the desire for a trusting, collaborative relationship with their audiologist, with referral to the appropriate professionals when we just don’t have all of the answers. An article published in the American Journal of Audiology confirmed these statements; parents and caregivers want their voices to be heard, and they want their child’s treatment implemented in a coordinated and professional manner. Fitzpatrick, et al. (2008) interviewed 21 parents about the strengths and weaknesses of the standard audiologic care system. Although most parents were satisfied with the range of services provided and the quality of services, they did have a few suggestions for us to consider. Family-centered care and a high level of support have been linked with higher rates of follow-up, better participation in early intervention services, and ultimately improved outcomes for the child.

Two Things Click

After listening to these parents on that otherwise-average Wednesday, two insights have stuck with me.

• The clinician leaves the office at the end of the day and may not communicate with the family until the appointment nears. In the meantime, parents, family member and caregivers spend most waking hours with the child every day! And those hours can be “messy.” Children and their parents need breaks from the technology sometimes. They will likely lose a hearing aid or two. Earmolds will need to be remade routinely. Children get sick, teeth, and have bad days, which impacts amplification use. Families need their audiologist to provide not only information, but empathy for those challenges.
• One mother became emotional while talking to our class. She reported that, yes, hearing aids do sometimes get wet, and children do sometimes get hurt while playing sports. But what kind of childhood would their son or daughter have if they were kept from participating in all of the activities that they loved? Gymnastics, swimming, volleyball, horseback riding, and simply playing in the backyard are all activities that typically hearing children participate in; why should a child with hearing aids or cochlear implants behave any differently?

If we as audiologists can recognize a family’s unique needs, we can ensure the child obtain not only access to all of the necessary auditory stimuli but also access to healthcare professionals, educators, and other families. If and when problems do arise, they will become that much easier to solve when the family-audiologist relationship is built on mutual trust and understanding.

Reference

Fitzpatrick, E., Angus, D., Durieux-Smith, A., Graham, I.D., & Coyle, D. (2008). Parents’ needs following identification of childhood hearing loss. American Journal of Audiology, 17, 38-49.

Laura Rickey, Class of 2017

The University of Akron/NOAC

First, I would like to share the story that inspired me to write about this topic. Dr. Kristina English shared it with me after a hearing screening. The story is as follows:

A family had been given the news that their grandmother’s illness had received every available treatment, and it was now time to think about keeping her comfortable in respite care.  The patient had been a hearing aid user in the past but while managing several recent emergencies, the family realized the hearing aids were lost.  Now that the grandmother’s pain was under control, she wanted to talk to every one of her beloved family members — although she could talk, she couldn’t hear their responses.  So the family found the audiologist who had fit the most recent set of hearing aids and asked for help.  New hearing aids were quickly provided and the family made full use of them, sharing memories and stories, and laughter and tears with the grandmother for as long as she was able.  The time did not last long, however, and she peacefully passed away 10 days later.  The audiologist was contacted about her passing and also the memorial service.  She told the family she would arrange for a refund, but they declined.  They reported that they “got more than their money’s worth” in those 10 days, and they would rather have the audiologist hold on the devices for other families who could use the same kind of help.  The audiologist followed their wishes, and has lent the devices to other families in the same end-of-life situation. The devices are lightly engraved with the words, “Use with Love.”

After hearing this extremely powerful story relating to the end of life and audiology, I decided to try and find out more about this topic. I came to find that there is very little information in the literature about the end of life and audiology. This came as a surprise to me, as audiologists serve a population with whom the end of life topic must be considered. This got me wondering if, as professionals concerned with communication, are we focusing most of our interests on early life, and possibly negating a very important part of life, that is death? In the book, Death and Dying, Life and Living, the ideal is shared that death is a very important part, if not one of the most important parts of individual’s life. There is absolutely no doubt that it is important to make sure that children receive auditory input as soon as possible, but are we focusing so much on this aspect of audiology, that we are forgetting about other times in life that communication is of the utmost importance? Is it possible that the first few moments, weeks or years are just as important as the last? Do audiologist have a place in end of life care? Is it ethical to recommend amplification at the end of and individual’s life? These are all questions that, in my opinion, need answers.

Do we Have a Place in End-of-Life Care?
According to the National Hospice and Palliative Care Organization (2011), hospice provides expert medical care, pain management, and emotional and spiritual support not only for the patient, but also for the patient’s loved ones. Hospice care involves an interdisciplinary team of specialists including; the patient’s primary physician, hospice physician or medical director, nurses, home health aides, social workers, bereavement counselors, clergy or other spiritual counselors, trained volunteers, and speech, physical, and occupational therapists, if necessary. Audiologists are not currently listed as interdisciplinary team members for hospice and palliative care, but should we be? Continue reading →

Peter Huchinson, Class of 2016

The University of South Florida

When I hear the word tinnitus, my eyes widen and endorphins race to my brain. Ringing in the ears—one of the most common issues associated with any type of hearing loss— is the topic of research for my doctoral project. When I hear the words ringing, buzzing, whooshing, or pulsing my hyper focus kicks in and I say to myself “this is my thing”. I have read article after article discussing statistics about who tinnitus affects, what might be the cause of this debilitating ringing, how it is measured in humans and animals, and the general lack of understanding in this subject. So when I found myself face to face with a patient who was so deeply disturbed by her tinnitus, that she was willing to request a nerve section, I realized that I did not know that much at all. What I realized that I lacked, was personal connection, empathy, and the counseling ability that I knew was going to be crucial to this case. Additionally, I realized how much I did not know regarding tinnitus and management in a clinical population. I learned two important lessons with this patient; the first being serving the patient and not just the condition. The second being that sometimes there are things that are simply out of my control and my scope of knowledge.

Providing patient-centered care is something that sounds appealing and makes logical sense, but often I find difficult to practice. When I see a moderate, sloping, high frequency hearing loss, I think about the hearing aid I will recommend at the end of the appointment. When a patient complains of dizziness upon getting out of bed, I consider BPPV. These initial thoughts are natural, and there is nothing wrong to start thinking about the issue at hand and the recommendation that I will make. The problem is that I often find myself stopping there. I forget to consider the needs and desires of that particular patient. I forget to consider the patient’s activity limitations, participation restrictions, and perceived or experienced stigma. I forget to consider the emotional journey that the patient has been on for much longer than the last 30 minutes that they have been in my sound booth.

I realized that I needed to practice better patient-centered care the day I first met the patient with the debilitating tinnitus. Tears poured from her eyes the entire appointment. I tried to offer knowledge, suggestions, and recommendations, but the tears would not stop. Upon reflecting on this appointment, I realized that I tried to provide informational counseling, when what she needed was emotional counseling. I tried to suggest technology and rehabilitation programs without developing a common ground with the patient.

“At the end of the day, patients are autonomous beings, and they decide whether to follow our recommendations. Those decisions depend heavily on the partnerships we develop via counseling. And this approach is an evidence-based practice. Finding common ground has been shown to be a key to a successful clinical outcome. (Brown, Weston, & Stewart, 2003)” (Clark & English, 2014)

It did not matter what I suggested at the moment. At the moment, my patient wanted support counseling. She wanted to know that we haven’t reached the end of the road. She wanted to know that the people she was looking to for help understood what she was going through, and that we weren’t going to just give up. She wanted to start a relationship of complete care and trust, instead of a regiment.

A different issue that I encountered was including and counseling this patient’s husband. Counseling loved ones is something that my (lack of) experience has not afforded me yet. The husband, while being caring and defensive for his wife, tried time and time again to get information out of me that I was not confident to or capable of answering. “What is causing this? What is the likelihood of it getting better? Why are you passing us off to the physician? Why won’t you give us answers?” This reminded me that counseling the communication partners, as well as the patient, is an equally important activity. I had not appropriately devoted time to helping the husband understand my role in the process. He heard my suggestions for technology and other options, but he had not heard me validate his or his wife’s personal journeys.

The other lesson that I learned was that sometimes there will be cases that are out of my ability to handle or out of my scope of knowledge. When the husband pressured me for medical advice I had to be careful regarding what information I could offer. It was a situation that I had never been presented with before, and it made me realize that I need to be prepared to refer a patient when their issues are beyond my ability to help. I think that much of this tension could have been avoided by developing a more trusting relationship through better patient centered care.

Regardless of what happened during the appointment, I am thankful for the learning opportunity that this patient and her husband offered me, as a growing clinician. I learned the importance of listening to the patient’s journey and experience, and I learned that I need to know when I am no longer capable of providing adequate care and when to refer. I hope that every student and young clinician has an experience where they feel uncomfortable, unprepared, and less than qualified. These are the experiences which transform us from mere button-pushers and technology experts into the exceptional clinicians that our patients deserve.

Reference

Clark, J. G., & English, K. M. (2014). Counseling-infused audiologic care. Upper Saddle River, NJ: Pearson Education, Inc.

Chelsea Twyman, Class of 2016

Kent State University/NOAC

When audiologists and patients discuss amplification, the topic of realistic expectations must be carefully discussed. This discussion lets the patient know that adjusting to amplification will take time, patience and effort, and that struggles might occur along the way.  Some patients have minor challenges that we can readily solve with programming adjustments.  Most patients can also acquire new communication and coping strategies, especially if we remember to provide that support.  However, how can we help patients who still struggle with the following challenges after their month-long hearing aid trial?

• Not advancing to appropriate amplification target/not obtaining enough benefit;
• Not tolerating high frequency input/not improving speech clarity;
• Daily HA maintenance and/or using hearing assistive technology (HAT);
• Psychosocial distress (perceived HA benefit but burdened by cosmetics, stigma, etc.);
• The hard work of adjustment outweighing perceived benefit.

Patients struggling with these challenges could benefit from group support, defined by Katz and Bender (1976) as “voluntary small group structures for mutual aid in the accomplishment of a specific purpose…usually formed by peers who have come together for mutual assistance in satisfying a common need, overcoming a common handicap or life disrupting problem, and bringing about desired social and/or personal change” (cited by Solomon, 2004, p. 393).

Support groups can help not only patients but also their communication partners, since they too are directly affected:

Brooks et al (2001) described frequent misunderstandings and resulting frustrations in couples in whom one member had a hearing loss. Piercy and Piercy (2002) reported that limited communication can negatively affect a couple’s intimate relationship. Most recently, Scarinci et al (2008) noted a broad range of effects that hearing loss had on the SPs [spouses] in their everyday lives. They noted difficulties in carrying out normal conversations, effects on the SPs’ emotions such as frustration or embarrassment, limitations in their social lives, and increased tensions in their marital relationships. (Preminger & Meeks, 2010, p. 316)

These studies highlight the importance of including both patients and their communication partners in a support group, specifically a group aural rehabilitation program.

Recently, I attended a support group for patients with cochlear implants (CI) and their significant others.  The patients at this support group all had difficulty with two or more of the categories discussed above.  Usually, this support group splits into two subgroups — one for CI users and one for their communication partners, to chat separately before coming together near the end of the session.  On the day I visited, attendance was small due to the weather, so the group stayed together the entire meeting. Continue reading →

Chanel Rogers, Class of 2017

Kent State University/NOAC

This past February I had the opportunity to be involved in a hearing screening at a senior health center. I never imagined a hearing screening would provide me with as great of a life lesson as it did. I had the pleasure of meeting and screening a woman (“Ms. B”) who was around 65 years old. She reported interest in our screening program because she had been experiencing difficulties in many areas of life that require hearing, such as not following what was being said in one-on-one conversations, contributing to conversations in a group setting, and understanding song lyrics while attending church.

With all of the many listening challenges that Ms. B had described, I expected her results from the hearing screen to show that she had at least a moderate hearing loss, but that was not the case. The results that I collected showed a mild hearing loss with no frequency tested being greater than 35 dB, but it affected her greatly on an everyday basis.

Earning Trust

My preceptor and I summarized our brief test, relating the results to the troubles that she had mentioned.  She seemed to feel safe with us, because she then began to recount not just other hearing problems and her family’s frustrations, but other health and safety concerns and their impact on the quality of her life.  The more she shared (“This is the first time I’ve said this out loud”), the more she seemed to understand her resistance to help (“As they say, denial is not just a river in Egypt”). I believe Ms. B started to trust us (English & Kasewurm, 2012) and her trust showed through the emotions that she shared.

Ms. B began to cry and as more information came out, a revelation occurred to her. We silently marveled as Ms. B moved herself out of the state of denial, into acceptance. By the end of the screening, she was ready to make an appointment to discuss the options available to her for amplification and other assistive technologies.

Catharsis and Change

When she felt ready to leave, Ms. B put on her coat and while tying her belt, she said with some surprise and relief, “I feel better!”  Later, we reflected on that comment, indicative of catharsis.  When given the opportunity (i.e., given time, respect, compassion), patients may feel ready to unburden themselves of worries and fears. Once these are shared with a receptive listener, the speaker does not feel alone and defensive, but instead feels understood and supported (Stone et al., 2010).  The subsequent emotional relief changes how we view change: perceived barriers are no longer insurmountable, and options can be considered.

In this experience, I learned a very important lesson that I will carry with me throughout all of my future years of practice. That lesson is that, no matter what the hearing loss looks like on paper, it can affect each individual differently. Before this day, I did not think a mild hearing loss would have such a great impact on someone’s everyday life as it did with Ms. B. She helped me see firsthand that being in the healthcare field requires us to be compassionate and empathetic to the issues that the patient faces and also that just because the patients are in to see for a particular reason, there may be something deep down that has been suppressed that may come to light with their time with us.

This day made me realize that it is true that we must treat the whole patient and not just the hearing loss, which is an essential mental note I will carry with me forever.

References

English, K., & Kasewurm, G. (2012). Audiology and patient trust. Audiology Today, 24(2), 33-38.

Stone, D., Patton, B., & Heen, S. (2010). Difficult conversations: How to discuss what matters most. NY: Viking.

Nicolle Yopa, Class of 2015

Kent State University/NOAC

Last year I was presented with an ethical dilemma in clinic. The patient was a high functioning 21-year-old male with Down Syndrome (“John”), who had a bilateral mild-to-moderate mixed hearing loss. John was enrolled in college classes and was being evaluated as his hearing impairment was affecting his ability to follow along in large lecture halls. He was also about to move to campus and live independently, so it was more important than ever that his hearing impairment be treated.

John received much support and encouragement from his father to proceed with amplification. The father attended every appointment with John, including the hearing aid evaluation. We recommended RITE aids with custom molds, as John would likely have difficulty inserting a dome in his ears due to dexterity issues. The father agreed and chose to proceed with the fitting. The next day, the father called the clinic; when he discussed our recommendations with his wife, she requested we change the custom molds to an open dome for cosmetic reasons. My supervisor explained to him that we could fulfill that request, but John would have to display successful insertion of the hearing aids before we could let him leave with them. Privately, my supervisor worried that fitting John with domes would set him up for failure.

Worries Confirmed

Both John’s mother and father accompanied him at the hearing aid fitting. This is when we learned that the family was not in complete agreement with our recommended plan to treatment. Unlike the previous appointment, John now wanted nothing to do with the hearing aids and even cried after experiencing difficulty with inserting the dome tips. Despite his difficulties, his mother opposed switching to custom molds. Her main concern was that the hearing aids could be seen from behind. This concern in turn became John’s concern and he showed much discomfort in wearing them. His mother stood her ground when we wanted John to keep practicing. She told us that they were “educated people who could help John at home.” For reasons unknown, family and audiologists were not sharing the same goal: to confirm that John could manage this task on his own.

The appointment was scheduled for an hour but John’s mother cut us off at 30 minutes because John had class. We told her we had planned on an hour because many important things needed to be discussed; regardless, they opted to cut the appointment short so that John could make the last 20 minutes of class. My supervisor reluctantly agreed to let John leave with the hearing aids and have his parents practice with him at home.

As an educational clinic, we routinely video record the appointments so that we can critique ourselves later (with written patient permission, of course). When we later viewed this appointment, we learned that John had cried when we stepped out of the room and tossed the hearing aids on the table calling them “a total waste of time.” On his way out, he was heard to comment to his mother that he was taking them off before class.

Predictably, Things Got Worse Continue reading →

Alison Marinelli, Class of 2018 (AuD/PhD)

The University of Connecticut

Ideally, patients form bonds with their audiologists because of the unique role in caring for them and their devices. Repeated positive interactions allow for greater relationships to develop. As a patient, I’ve had the pleasure of working with several talented audiologists over the years and have had a variety of experiences. Now that I’m in graduate school for audiology, I can’t help but use the academic material that I’m learning to take an analytical eye to my own audiologic experiences and evaluate them more thoroughly. A particular experience that was critical to my young life was the tragic death of my beloved audiologist, Dr. Toni Maxon.

Bonding ….

Toni was one of the first audiologists that my parents consulted after my diagnosis of hearing loss at nine months. My parents were seeking all possible avenues to treat my hearing loss, and were exploring the auditory verbal path when they visited her at the University of Connecticut Speech Language and Clinic. I don’t remember these early days, but it was always obvious to me that Toni’s empathetic counseling assisted my parents with the coping process associated with the diagnosis.

Dr. Toni Maxon

My father affectionately recalls the time when my parents were discussing amplification options and I was eating crackers, babbling to my parents about the toys I was playing with nearby. Toni gently pointed out to my parents how desperately I was attempting to communicate, and that the limited language I was producing was due to the limited inputs I was receiving. The kind manner with which she delivered the information touched my parents and started a very close working relationship that carried on throughout all future treatment. When Toni left the UCONN clinic to start the New England Center for Hearing (NECHEAR) with Dr. Diane Brackett, I continued services with her there. My parents and I looked forward to appointments and we continued our sessions with respect for her knowledge and appreciation of her superior services. As she had the ability to impart life experience, give advice, inquire and be truly interested in our family as time marched on, we valued her more and more.

….And Then Loss

This congenial relationship changed in 2007 when my family received a phone call that informed us that Toni had been in a car accident that claimed her life.  As anyone who experiences an unexpected event like this would be, we were devastated. A memorial to celebrate her life was organized, and I was asked to speak. I spent countless hours editing and revising my speech, but the words never seemed to accurately represent what Toni meant to me. I remember delivering my speech at her memorial, and choking up at the fact that I had to say goodbye. NECHEAR had also planted a memorial garden, and to dedicate it, they held a celebration of Toni’s life. Both of these special events helped to ease the pain of loss. In the aftermath following her death, qualified clinicians were brought in to program my cochlear implants. The co-founder of NECHEAR, Diane Brackett, also a long-time clinician of mine, sat in on the initial mappings and conveyed important audiological information to the new clinicians on my case. Since I had known Diane previously, she bridged the gap between the old and the new. Continue reading →

Emily Pajevic, Class of 2015

The University of Akron/NOAC

Over the years it has become clear that counseling is a key component in patient care and in promoting patient success. In pediatrics this counseling is primarily focused on the parents. It is, after all, the parents who will be responsible for raising the child and helping the child over the many challenges they are bound to face as a family. Here a large assumption is made: we assume that at the point of diagnosis, the child is too young to understand the implications of the news presented to the parents. We often picture an infant, asleep in the mother’s arms or a child playing with blocks on the floor while the results are being discussed. When the child gets older we ask parents for a progress report: How is she adjusting in school? Is he wearing his hearing aids? Making friends? Developing some self-advocacy skills?

All valid and important questions but what about when we evaluate teenage patients who are old enough to understand what is being said? Here we may be at a loss. We are now looking at too many unknowns. Will they trust us enough to explain their challenges? Will they understand what we are trying to explain? How might they react? Should the parents be the one to explain? How much information should we give them? How are we to begin to explain to an adolescent when we still struggle getting parents to understand? How do we know when they are ready? Unless we consider these questions ahead of time, we tend to take the familiar route, the route of safety: we talk to the parents, picturing that child to be the infant we are perhaps more comfortable with. We then allow the parents to fill in the gaps at home.

A possible scenario

Consider how this tendency affects this thirteen year old patient as she learns of the results of her auditory processing assessment:

Amanda shuffles her feet back and forth, staring down at the floor, wondering what the cafeteria at school had served for lunch today and what her friends were doing during gym class at this very moment. She sits on her hands and kicks her feet back and forth more vigorously, deep in thought until she catches her mom’s narrowed eyes, clearly telling her to knock it off. Man, mom is in a bad mood today. She glances over at her mom who is now drumming her fingers on her thigh with a furrowed brow. What’s her problem? Amanda thinks. I’m the one who has been asked stupid questions all day and had to sit in that tiny room for over an hour while she just read magazines.

Just then the door opens and her mother quickly straightens up and folds her hands in her lap, her expression eager. Amanda rolls her eyes and goes back to kicking her feet. She watches the feet of the audiologist as she walks in and sits down across from her. Amanda goes back to thinking about her friends, idly listening to her mother and the audiologist talk. “Just so you know, an auditory processing disorder is not considered a learning disability in this state so be prepared to push a little to get Amanda the help she needs.” Amanda’s right foots kicks the leg of her chair and she throws out her arms to steady her chair as it tilts. Learning disability?! Amanda flushes and stares at the floor listening carefully now, her feet still. The audiologist is talking about giving papers to the special education department and tutoring and then… “Amanda, what are your thoughts?”Amanda feels her face and eyes burn, her head spinning with the words disability, special education, help…she keeps her head down but raises her eyes to see the audiologist and her mom staring at her with strange, forced patronizing smiles on their faces. “I’m fine,” she says quickly, suddenly wishing she had gone to school today instead. “Amanda please tell us what questions you have, you must have some.” “No!” Amanda says too loudly, startling both her mother and the audiologist. Amanda stares furiously at the floor. She takes a deep breath to steady her voice, “No. Fine. Mom, let’s go.” Her mom stands up to shake the audiologist’s hand. Amanda stays seated until she sees her opening and then slides off her chair, aims for the door, and walks back to the waiting room without another glance at the audiologist.

How does an audiologist best serve Amanda and other adolescent patients? We cannot continue to primarily address the parents, undermining the patient’s knowledge and concern for his/her own healthcare and yet cannot ignore the parent’s need for understanding and the crucial role that they play. In healthcare, as well as our own profession, this topic of interacting with adolescents needs to be explored. If the unknown prevents us from providing the best care to this patient population, it is time to delve into this uncharted area, further expanding our knowledge and understanding to enhance our field and our impact on those we serve. Continue reading →

Michael Squires, Class of 2014

The University of Akron/NOAC