Understanding Hearing Loss Stigma — What New Research Reveals

Speaker 1: Welcome to This Week in Hearing. I’m Shari Eberts. Did you know that one in three adults over the age of 50 keeps their hearing loss a secret? Despite recent advances in cool hearing tech and international research program found that hearing loss is still linked to stereotypes about aging and disability, and this can discourage people from seeking help. As somebody who’s suffered with hearing loss stigma for many, many years, I can relate to that. But I can also attest that moving past stigma has improved my life as well as my ability to communicate effectively. Today’s guests are experts in the psychosocial aspects of hearing loss, including the grave impact that hearing loss stigma can have on uptake of hearing devices and on living well with hearing loss. So welcome to Dr. Katie Ekberg, she’s a senior lecturer in health sciences at Flinders University, and Dr. Louise Hickson, a professor of audiology at the University of Queensland. So thank you both for being here. I really appreciate it.

Speaker 2: Thank you.

Speaker 3: Thank so much for having us.

Speaker 1: So before we jump into the recent research that you have that we’re gonna talk about, I would love to just learn a little bit more about each of you and what drew you to hearing loss research and this recent focus on stigma?

Speaker 2: Sure. So my background is in psychology rather than audiology, so my research has always explored psychosocial aspects of health and, and improving healthcare. Then back in 2013 I started working with Louise at the University of Queensland in hearing research. And so ever since then, for the last 13 years or so my research has focused on psychosocial issues and impact of hearing loss on people’s lives. And one of those big psychosocial factors is, is stigma. And so it’s yeah, been across the last seven years or so that we’ve been exploring stigma related to hearing loss more.

Speaker 1: Louise – How about you?

Speaker 3: yeah I’ve been an audiologist for 40-plus years or so now, and for the first 10 years I worked clinically, and then after that came to the University of Queensland and got engaged in hearing loss research. I think working clinically made me question a lot of things. You know, I worked in adult rehabilitation and why do people use… Why do some people successfully use hearing devices and others don’t? All those questions that you have that we really had no answers to. And so my research has always been collaborative, multidisciplinary and trying to answer some of those questions that will have an impact in the clinic.

Speaker 1: Yeah. Wonderful. No, that’s great. As, I can imagine that having that sort of hands-on experience helps you to figure out what questions are the important questions to look at, so I love that you have both of those experiences.

Speaker 3: Thank you.

Speaker 1: So when we’re talking about the impact of hearing loss stigma, I guess the real first question is how do you define stigma? Are there different types of stigma? Is there a special stigma associated with hearing loss and, and how did you measure it in your research?

Speaker 2: Yeah. So sort of a, a broad definition of stigma is a physical or social attribute that results in someone being categorized as different and then discredited for that attribute. But then in our research we also took a social approach to our definition of stigma. So stigma’s not just a, a fixed trait inside someone that, that always stays the same. But stigma’s really the result of a social process and it’s people experience stigma differently in different situations, different contexts with different people. They also respond to stigma in different ways depending on the context and the people they’re with. So we really wanted to look at stigma from this social perspective as this social process which hadn’t really been done before in relation to hearing loss. Yeah. So that’s, that’s sort of the definition of stigma we took. In relation to, like, types of stigma a sociologist called Goffman distinguished between two types of stigma what he called discreditable stigma, which is the more invisible type of stigma where the, the stigmatized attribute is not obvious to everybody all of the time. So hearing loss falls into that type of stigma. Whereas discredited stigma is, is the other type of stigma where the attribute is obvious to, to everybody all the time. So someone, if they had a very visible cochlear implant or, or some very visible device that was obvious all the time might fall into that category. But mostly hearing loss falls into that more invisible type of stigma.

Speaker 1: Yeah. And that can be really dangerous, right? Because if people don’t know it about us, it, it creates this self-identification issue. So we need to sort of raise our hand, right? Which… And the stigma holds you back from raising your hand in certain cases, and that can really have a big impact on isolation and just that ability to ask for assistance for communication.

Speaker 2: That’s right, and that’s what wanted to explore

Speaker 3: And that’s

Speaker 2: Oh, yeah. Sorry, Louise.

Speaker 3: it’s one of our key findings too, that, that dilemma. You know the title of the special issue we wrote about this is called “To Tell or Not to Tell” because it’s that constant, you know, if you do you take a risk-… but if you don’t, you also take a risk of being perceived as different for some other reason. So, it is really tricky, Shari.

Speaker 1: Yeah. Absolutely. I always tell people, and it took me years and years to do this, but if you can get just your hearing loss script, you know, down, just something quick and easy that starts to roll off the tip of your tongue, it just makes that process easier. And the you know, the first time you do it, maybe try it on a stranger because who cares if you mess it up and try it on another stranger the second time. And eventually, it just sort of rolls off the tip of your tongue. And then hopefully, at least for me, I started to feel less stigmatized using that script because it just became a pattern. It just became something that I did and, you know, once that was normalized, it was easier to sort of you know, raise my hand in, in certain situations.

Speaker 3: That’s a fantastic idea, Shari. That is, a great way to put it. We, we, we talk to people about how to disclose and try and individualize it, but that, that’s another really great option that will help some people, for sure.

Speaker 1: Yeah. Absolutely. So, maybe talk a little bit about how you conducted this research. And I know this is sort of very broad and many people participated, but what are some of the main takeaways from it? And, and how did you do it?

Speaker 2: Yeah. So, in terms of conducting the research we had two phases to the research. And in the first phase, we really wanted to do a, a, a really in-depth exploration of stigma coming at all different angles, so we used quite a lot of different methods. So we had, in that phase, 20 adults with hearing loss and 20 of their family members and the adults with hearing loss completed questionnaires they did interviews with the research team they also, over a two-week period completed little surveys on their phone within their social interactions or directly after, and they would do at least three of those a day over a two-week period.

Speaker 1: Wow.

Speaker 2: so we call those ecological momentary assessment surveys. And then they also, over a two-week period, video recorded some of their real-life social interactions with family and friends. Whatever they were doing over those two weeks, they would video record some of those interactions for us as well. And then in that phase we also interviewed 25 hearing care professionals to get their perspectives on stigma as well. And then we collated all those results from the first phase and developed a larger international survey for the second phase. And in that phase, we had over 300 adults with hearing loss and over 300 family members across Australia, the US and the UK complete that, that survey in phase two. Some of the key takeaways, it was nice to see that we, we got similar results from all the different methods that, that we used which was really nice. So the first takeaway you mentioned at the beginning, we still see stereotypes related to hearing loss come up, particularly in relation to old age. So that was the biggest one by far, but also sometimes in relation to disability and, and difference as well. So those stereotypes still exist. Another key takeaway was that adults with hearing loss felt stigma in relation to their hearing loss more than they did in relation to hearing aids. So they brought that up, the stigma related to hearing loss, much more. However, that was different for our hearing care professionals who focused much more on the stigma related to hearing aids and didn’t necessarily think that there was stigma related to hearing loss. And then as we’ve been talking about already, we, we… a big finding was that a lot of adults with hearing loss respond to that stigma by not telling anyone at all about their hearing loss, and then some people only tell some people in certain circumstances. But particularly people who don’t wear hearing aids often don’t disclose their hearing loss to to anyone. And yeah. So those that do disclose their hearing loss were more likely to, to take up hearing aids and hearing devices. I guess the other takeaway was that we found that almost 60% of adults with hearing loss felt that other people made a joke or laughed about their hearing loss. So yeah. That sort of teasing and joking about hearing loss was also a big factor for people experiencing stigma.

Speaker 1: Yeah. I know a lot of times when I will say to somebody, “Well, I… you know, I just wanted to let you know I have a hearing loss what might be a little bit challenging for me to hear you in this loud space,” they’ll all say, “What?” You know? And I think it’s their attempt at humor and just like, “Oh, I haven’t heard that before.” And I get, and I get it. It’s just like maybe they didn’t know what to say or what have you. But it can be off-putting, I’m sure, especially for people who are maybe newer to hearing loss to just sort of have that… just comes right back to you as sort of a joke, you know? It can, it can make you not want to disclose in the future, for sure.

Speaker 2: Yeah.

Speaker 3: our adults with hearing loss reported the same thing, Shari. They didn’t appreciate other people making a joke. Although they would use humor themselves sometimes as a way to disclose. It’s, it’s like any kind of disability, I suppose. It’s okay if you, if you do it

Speaker 1: Yeah.

Speaker 3: But it’s not all right if someone does it to you. So, yeah.

Speaker 1: Yeah. And it depends on how well they… you know, they know you or whatever. So, you know, but I agree. I always try and use humor myself because it just, it just puts everybody at ease, right? You know, if you if you feel like, “Oh, I’m gonna tell someone I have a hearing loss and then it’s gonna be a whole thing,” you know? And people are gonna feel awkward on both sides, that’s not what you want. You want to just let them know that so that we can communicate better and not feel awkward, right? To eliminate that awkwardness. And so when it creates awkwardness you know, you’ve gotta… try and get past that extra bit of it as well. So humor can be helpful for that.

Speaker 2: Mm. Yeah.

Speaker 1: Yeah. So I found it really interesting the disparity that you were just talking about, how the manufacturers and the clinicians really focus on the stigma of the hearing aids, the devices, right? And that’s sort of, like, what we always say as advocates is, like, the clinicians are always focused on that device. And then for the individuals and also the families, it was more about the hearing loss itself. So can you talk a little bit more about that? Like, why do you think there was that disparity?

Speaker 3: Yeah. It was fascinating, right? It was one of the big findings that we had that we really had to think about.

Speaker 1: Mm-hmm.

Speaker 3: I think the views what we found from the participants and their families is exactly what you said. For, them they talked about hearing loss and stigma associated with that. But straightaway the others, the clinicians would move to the devices. And in fact, the participants the adults with hearing loss and their families talked about seeing modern devices as being discreet high-tech. They said lots of positive things. which is not the image that the manufacturers and the clinicians hold about how people see them. So they’re really out of sync with each other. And I’ve thinking about that, I think that the focus on the stigma of the devices is so entrenched from years of perhaps when devices were different, bigger, more obvious, so they created that discredited stigma because you could see them, and I, I think it’s just something that hasn’t gone away. If we can break anything in this with this research, it would be that focus on the devices is the source of people’s concerns, because it really wasn’t in our research. So that was and I can only think that the reason is that it’s, it’s so entrenched, and also the focus of clinicians and manufacturers can be on devices, so they assume that that’s what they need to keep working on, having people accept them, whereas actually, it’s about accepting your hearing loss. Now.

Speaker 1: Yeah. And I think sometimes the devices also I mean, they’re very cool now, right? Like some of them, you know, won’t even look like a traditional hearing aid, right? Some of the over-the-counter devices or hearables, and for people with mild to moderate hearing loss, that’s a, you know, a, I think a good first step potentially, right, if you don’t wanna sort of take that leap into a more professional device. And I know a lot of time advocates are saying like, “Why don’t they make them in like purple or, you know, with polka dots?” Or rather than trying to make them be discreet, maybe, you know, maybe one idea is to make them not be discreet, but to be

Speaker 3: I would like that.

Speaker 1: … fashionable. Yeah, like like everybody has their cool glasses now, right? Like why can’t we have our cool hearing aids or, or what have you? Did that come up at all in, in the research? Or is that for, you know, maybe another time?

Speaker 3: I suppose what, what they can see, what they reported was that they did see that the new devices, the new range of different devices had opened it up a little bit, you know, and that they could see that it was more high tech and not sort of a disability issue what you wore on your ears. So no, they were really seeing that the latest range of all this availability of ear worn devices was making it more accessible for them to think about wearing an ear worn device. So I think there has been a change I would say in the last five years around that issue. Yeah. I don’t think they’re ready for purple necessarily yet.

Speaker 1: I think purple would be cool. Yeah, orange or something really, you know, let’s go crazy. Absolutely. So switching gears a little bit, I wanted to talk about the family members ’cause it seems like you included them in the research as well. And I know from personal experience, family members can feel very stigmatized when someone close to them has hearing loss as well. So do you, did you have any findings on how they experienced the stigma and, and what impact that might have on family dynamics or, or even on the person who had the hearing loss?

Speaker 3: Yes, we, we did interview families and we used a measure called the Affiliate Stigma Scale. We actually found quite low levels of stigma for the families in this study, but we’ve had people with mild to moderate hearing loss, some of whom didn’t wear hearing aids at all, and some who were just starting on that journey. So I think that we perhaps didn’t tap into some of our other research has suggested, you know, the impact on families. But in this particular work, we didn’t find so much of that. We did find families reported feelings of frustration, which often comes out and and helplessness was another one. An impact on them of being not sure what to do and how to help. So that can become a constant worry for the family.

Speaker 1: Yeah.

Speaker 3: I mean, our research suggests very much that families should be engaged in rehabilitation all the way through because they’re part of the telling as well, the disclosing, because they need to be comfortable. If someone with a hearing loss is going to tell all family and friends and all the people they meet, et cetera, have their script ready, it’s important that you work through that with your family and make sure they’re comfortable as well. Do you think there was anything else, Katie, in that space?

Speaker 1: No. So yeah, family members varied in whether they told other people about their family member’s hearing loss. So there was variation there. And I think, I think around half of them also experienced sadness in relation to their family member’s hearing loss as well. But yeah, the, the, the good news was that they, they had low levels of affiliate stigma themselves. So that was a positive finding.

Speaker 3: Yeah.

Speaker 1: no, that’s great to hear ’cause I know a lot of times it, that, that I hear from some of my friends with hearing loss is that they, if they grew up with it, which would be different situation here, this is more sort of adult onset, but if they grew up with it, it was perhaps something their families encouraged them to keep quiet, you know, and to, and to not advocate for themselves because of that stigma that, that they felt they were gonna be putting onto the family. And it, it, it can … And even when, you know, it’s something we develop later in life, if our families are not reacting in a supportive way and an encouraging way, it can also prevent us from seeking that assistance, right? Because it’s like, “Oh, well, if it’s going to hurt others for me to wear hearing aids or to talk about my hearing loss,” you know, nobody wants to, to hurt their, their family members. So it’s good that that was not a major finding in that sense that it, it, you know, they did seem to be more supportive than not. So I’m glad to hear that.

Speaker 3: Yeah.

Speaker 1: Yeah. Yeah. And what about hearing loss stigma in terms of clinicians? Like we talked a little bit about it, just focused on that device, but was there anything else that clinicians mentioned in the study about stigma?

Speaker 3: I think with that one, what I’ve been encouraging clinicians to do when I’ve been giving talks on this topic is to think about the stereotypes that they hold themselves and how those might be impacting the clients that they’re seeing in practice. Because these, these representations or stereotypes about hearing loss associated with aging and disability can, can play out. They may well hold them themselves. A lot of our clinicians are very young and they don’t they’re not sympathetic sometimes to, to how someone might feel. You know, I the other day they said, “Oh, you know…” I told this person who was 90 that she had a hearing loss and she said, “Well, I’m not old enough for that.” Well, that’s, that’s that person’s belief, their circumstance. So I suppose our message, messages for them is that stigma is variable, it’s unique, people’s experiences of it are unique, and so the key thing is to really find out how they feel and what, who they’ve told and what experiences they’ve had when they’ve told someone, because it doesn’t take too much of a negative response to really set people back. So our message, the impact on clinicians is for them to explore it a little bit more and not just say, “Oh, it’s, it’s stigma,” and that’s kind of one thing. It’s much more complex than that.

Speaker 1: Yeah. Well, I love that, and I, I love if they can, you know, join us on that journey of stigma, right, and sort of how do we overcome it and, and maybe give some practical suggestions on how to self-advocate in a way that lets you become more comfortable with it over time, so yeah. So in that vein, as we’re sort of wrapping up, I was wondering if there were any practical suggestions that you could share, either for people with hearing loss or their families, or how can we try and overcome the stigma? Do you have any tips?

Speaker 2: Yeah, so for adults with, with hearing loss, I think if, if, if you do feel like you don’t tell anyone about your hearing loss that’s maybe a sign that you, you do experience stigma in relation to your hearing loss. So telling someone can help as a first step of, sort of helping to overcome that and it might be a close family member or someone you, you trust with that news, but I really love your suggestion earlier that it could just be a random person that you, that you don’t know and it doesn’t matter as much what you say or how you tell them. But, but telling someone is, is a first step to sort of breaking down that stigma and as we talked about a bit before, using humor can sort of help break the ice when you’re, when you’re talking about your hearing loss, and we found in the videos that whenever someone with hearing loss did use humor there was a lot of affiliation and, and shared laughter and, and humor with the people around them about that. So we never saw the adult with hearing loss themselves using humor and it sort of not going well. It was always affiliation. It was only when other people used humor that that it was seen more as a tease and it didn’t go so well. So yeah, telling someone and also maybe talking to a hearing care professional about that support and about how how comfortable you feel about managing your hearing loss in everyday life. Hearing care professionals can, can help talk to you with that and start that journey for you as well. I guess for families learning some communication strategies that, that help support hearing loss it shouldn’t always just be on the, the adult with hearing loss to do these things, so more awareness about communication strategies and how the adult with hearing loss feels about managing their hearing loss in, in their everyday life and also being a bit more conscious about those, those teasers and it, it can come, it can feel for the family members like it’s just lighthearted banter but when it’s occurring all the time, as you sort of mentioned, all the time, it can sort of, yeah start to bring on that embarrassment or shame and, and, and like you don’t want to disclose your hearing loss anymore because of the teasers. So I think family members yeah, a greater awareness about that would be helpful as well.

Speaker 1: Yeah.

Speaker 3: For industry, they could, they could move away from the focus on hearing aids and, and think about the broader wellbeing of people with hearing loss if they take some action and accept their loss, and I think the devices are there. They’re just part of the picture, one tool, but you’d see a lot, we see a lot of advertising material that’s still focusing on, on the device itself and, and the look and I don’t think they’re spending their money wisely, dare I say it. Their advertising dollar.

Speaker 1: Absolutely. Absolutely, and, and those of us who wear the devices, we know that that’s not sort of like snap your fingers and the device is gonna bring your hearing back to normal anyway, so a focus on sort of the device plus I think is always a better strategy and, and more likely for that person who’s using the devices to have success with it. That’s what one of our big advocacy philosophies for people with hearing loss is, yes, the devices, but also the attitude that you have about it, right, the stigma or not that you’re facing, as well as sort of these behavioral changes that you need to, to make in addition to using those devices. So it really all kind of fits back together very nicely. Well, thank you very much, Katie and Louise, for being here with me today. I’ll let you just have any final thoughts you want to share, or how can people learn more about this research?

Speaker 2: Yeah, so all the research that we’ve talked about today is published in a special issue in the International Journal of Audiology and it’s all completely free to access so everyone can, can download the papers and read them as they wish but also we’re, we’re more than happy for anyone to contact us as well and, and chat more about stigma any time. Louise, do you have anything to add there?

Speaker 3: Oh, just to say that we’re also conducting some other research at the moment that’s very interesting and that’s around stigma experiences of people from diverse ethnic communities, and our particular populations in these studies were mainly white. We were, did work in Australia, the US, and the UK, but what we’re finding in some of these different communities in Australia is much higher levels of stigma. So I suppose that’s a, that’s a, a sort of a warning, a watch this space idea because we, we will have more to say about that, and so I think there are some greater challenges and different challenges for different populations. Thank you for having us.

Speaker 1: Yeah. Well, thank you so much. Have a great day, guys.