The Social and Emotional Consequences of Hearing Loss and How Clinicians Can Better Address Them with Bec Bennett, PhD

Hello and welcome to another episode of This Week in Hearing. I’m Brian Taylor. This week our topic is the social and emotional consequences of hearing loss and how clinicians can better address them. Our guest is Dr. Bec Bennett, brain and hearing research lead at the Ear Science Institute Australia. We’ve had Bec on the program before and I’m enthusiastic to have her back. Welcome back, Dr. Bennett, to our little program here. Thanks Brian. Good to be back. I know it’s been a little bit more than a year since we had you on, and you have seen your name on more than one article that’s been in the peer reviewed literature. And what we’re going to talk about here today. Social and emotional consequences, I think is a really important topic. And I think maybe to kick that topic off, I wanted to help. Maybe if you could maybe describe what you call in some of your articles the lived experience of hearing loss in adults. Yeah, certainly. So the social and emotional impacts of hearing loss is one of my favorite topic areas of research. I work in a few different areas and this one is definitely close to my heart. I was a clinical audiologist for twelve years before I moved into research. And so I used to see this a lot in the patients that I would see in the clinic. So to all the clinicians watching today, I’m sure you see some of your clients view their hearing loss as sort of a very kind of anatomical thing that happens to them and they get hearing aids and they get on with it. But I’m sure you also see those clients who really feel the weight of their hearing loss and are willing and wanting to open up and talk about how their hearing loss affects them. So as we know, hearing loss not only affects our ability to hear, but it affects our ability to sort of communicate and interact with people and the world around us. So people with hearing loss often miss the punchline of a joke or they miss the little secrets in between, and they can feel quite disconnected from their family and their friends and in their work environment, and it can play out in lots of different aspects of their life. Now, I think it’s really important as audiologists that we develop the skills to create a safe space for our clients to talk about how their hearing loss impacts on them. But some of the earlier research I did in 2019 showed that audiologists aren’t routinely asking about mental well being or social and emotional well being, and they’re not creating that sort of space for their clients to talk about and to validate those experiences. So one of the things we did is we ran some focus groups where we interviewed adults with hearing loss and sort of had. A deep dive to find out all the different ways hearing loss can impact on them. And we’re very grateful that these adults with hearing loss were comfortable and open in sharing the breadth of their experiences. And what I’ll do is I’d love to share with you a little video that we’ve put together, which is where some of the individuals from the interview were happy to be a part of this video so that we could capture their stories, to share them more broadly with both the audiologists that we work with but also with the general public. So these videos are freely available on YouTube and we know a lot of clinicians putting them on their websites and sort of to share with the to help raise awareness of those social and emotional impacts so that we can really validate that experience of the clients we work with. I do feel excluded because sometimes you hear conversations and laughter and you’re not part of it. You hear bits of it, but not the whole conversation. When I gave up I was devastated. I was at the top of my game in a fabulous career and I had to give it up because I just had to deal with the ear health. Had to there was nobody I could talk to about how devastated I felt. Loneliness is an issue that comes with hearing loss. Two people are having a conversation and you’re a third party in that conversation and they’re talking and I’m thinking what on earth are they talking about? In order to avoid having to communicate with people I’d rather just be by myself. I almost play cryptic crosswords when I’m listening to people because I hear a word. I’ve got to make an interpretation as what that word was and I can quite often get the wrong meaning. I have been embarrassed in that scenario without realizing it. I probably speak quite loudly now. I mean, a guy walked in that I didn’t know and I turned to my daughter who was sitting next to me and I said oh, is that so and so? But apparently I said it in a very loud voice and she said to me, mum, mum, you’re speaking too loud. And that was very embarrassing. In that situation, I would say that I have felt excluded at most social gatherings, even with hearing aids. Despite telling people that you are hearing impaired or deaf, they don’t change their behavior. And I’ve got to the stage now where I actually avoid large gatherings. I don’t mind going one on one or one on two and that’s about my limit. Because you get tired of saying to people I can’t hear you, I can’t understand you. Usually I just sort of think how long is this going to last? Hopefully it won’t be too long. When you’re somebody who has always enjoyed being. Social has enjoyed networking and things like that. It’s it’s a bit of a shock to your system. My wife might be watching a TV program and and she’ll suddenly laugh, and I say, what happened then? And she’ll say, I’ll tell you later, because otherwise she’ll miss the rest of the program, obviously. And most of the time later doesn’t come. So as a result, there tends to be that that issue of exclusion, it’s a continual frustration in our day to day life. It doesn’t matter how long you live with someone who’s deaf, you think they’re not you’re not aware of it all the time. You just think they can hear like you. So I’m continually repeating everything I say because even though I’m aware that he’s deaf, it’s not something that’s embedded in my brain. My audiologists have never discussed the feeling of isolation or loneliness that I have with hearing loss. I don’t think it’s ever occurred to them to discuss it. I guess it’s not something that when you go there and you have a hearing test, don’t necessarily think of things like this. It would be great if an audiologist could take you a little bit further down and the path on the other emotional side, not just the physical hearing aid side. If my audiologist had tips that could help me in certain situations, I’m sure I would gladly receive. Thanks for sharing those videos with us. Beck yeah, so as you can see there, Brian, they’re really quite emotional. I love how Doug sort of describes it. As his wife says, she’ll tell him the punchline of the joke later, or she’ll explain it later, but later never comes, and you can really see the sort of emotion in his storytelling there. And so I think sometimes as audiologists, because we only see our client for an hour snippet and there’s so much we’re trying to do in that appointment, and then we see the next person and the next person. And so I wonder if sometimes we become a little bit desensitized to how much hearing loss can really impact on a person’s life. And so I guess if there’s one thing I’d love people to take away from the video today, from our interview, is to create that space for our clients to, if they want to talk about the social and emotional impacts of hearing loss, talk about their psychological well being, and talk about how they’re coping or not coping well. Speaking of coping, one of the articles of yours that I read. That I thought was really interesting kind of laid out a model around some of these coping mechanisms. So I was kind of hoping you could explain what some of your research uncovered around these coping mechanisms that people use to overcome some of these consequences of hearing loss. Yeah, sure. So we ran another group of focus groups where we did a deep dive into when adults with hearing loss experience these sort of social and emotional impacts of their hearing loss, what do they do, how do they cope? And it probably does not come as a surprise that quite a lot of them have maladaptive coping strategies and by that I mean they enact behaviors to try and cope but they’re not successful behaviors. They kind of reinforce the negative situation that they’re in. And because we’re talking about hearing loss and all the audiologists listening will have firsthand experience of this, that one of the biggest coping mechanisms employed is withdrawal. And so it could be that they withdraw physically and stop or they may physically attend but withdraw emotionally and so are sitting at the table at the conversation but just in their own mind and no longer participating in the conversation because it’s become too difficult. And so in this paper, we found that I think it was about two thirds of the coping strategies employed were these maladaptive coping strategies of withdrawing and so people with hearing loss didn’t have the skills for how to manage those challenging situations. However, about a third of the coping strategies were actually great and wonderful and effective and positive coping strategies. So there are things people can do but people don’t always have the skills or the knowledge or the understanding of what to do or the behavior change ability to make those changes and adapt to the better behaviors. So some of the examples of positive coping strategies included humor. We all know humor can go a long way so being able to sort of make light of a challenging situation. I can recall a client that I worked with years ago who had a great sense of humor. And instead of being concerned that if he misheard and said the wrong thing in a conversation, if someone pulled him up for saying the wrong thing because of him mishearing, he would just turn it into a joke and really make light of it. So comedy or laughter was a great positive coping strategy for him. Other coping strategies include some of the more traditional things we teach in our audiology practice. So communication tactics, having those communication repair skills, modifying the listening environment and. Asking for repeats in a healthy way, leaning on significant others. So not only the person with hearing loss having to develop those skills, but training the significant others in how to be a support person for that significant other in those challenging situations that can be the person with hearing loss doing that themselves or as the audiologist inviting those significant others into the appointments so that we can train and coach them as well. Well, it’s really interesting, I think, what you discovered about these coping strategies because it sounds like the positive coping strategies may be ones that people just sort of naturally might gravitate towards or just kind of do and maybe stumble upon it. Is that kind of true? Yeah, I would say all of them. So we were focused predominantly on what they were doing rather than where they learned those skills. But towards the end of the conversation, we did start to ask is there a role for the audiologist? How can we better support you in this? And they were saying things like my audiologist never asked me how I was coping socially and emotionally. My audiologist never asked if I needed help or asked how I cope in these difficult situations and never offered me training on these other aspects sort of thing. Well, and that leads me to the next question, which is could you tell us a little bit about the clinical approach that you’ve developed? Now, with my Midwestern American accent, the acronym is not going to sound very good, AIMER I think it is, but with your Australian accent it sounds much more pleasant. Could you explain and tell us because I’m really excited about that. As a clinician myself, I think that there’s a lot of utility that can come from this approach that you’re developing. So please share with our group, our audience, what you’ve learned and what your approach is. Yeah. Thank you. So, based on the feedback we had from the adults with hearing loss talking about how the social and emotional impacts of hearing loss were sort of bearing down on them and they didn’t have support, but they really wanted their audiologists to support them with these needs. And also there was a body of work where we looked at the clinical audiologists and they said while they don’t currently provide social and emotional well being intervention and support to their clients, they would really like to they would like it to become part of their offering. We went down this track of developing an intervention to see how we can increase and improve how audiologists provide social and emotional well being support. So we use this approach called the behavior change wheel. It’s based in behavior change psychology and essentially it allows us to see the audiologist wants to be doing this, but. Don’t have the sort of the skills or they’re not in the habit, they don’t have that behavior in place to currently offer that sort of support. So the behavior change wheel is this eight step process. It’s really comprehensive. It took a very long two years to go through, but it was a marvelous process to undertake because it was very, very thorough and it meant that the end result was really successful. Whereas I think if we just kind of had a go of making it up, it would not have been anywhere near as successful. So what you do in following the behavior Change wheel process is you first of all, look at the big picture, the big problem, and then you start to drill down and identify the core problem behaviors. So to do this, we ran what’s called a community conversation. So instead of being a bunch of researchers sitting in an ivory tower and us deciding what needs to happen, we had a community conversation. And we sat down with audiologists clinic managers, clinic administration staff, adults with hearing loss, their significant others. We included GPs, psychologists. We had big conversations with lots of people to look at what support do adults with hearing loss need and what behaviors or what can we put in place to better support and improve the social and emotional outcomes for adults with hearing loss? And collectively, they came up with 32 different problems we could fix. And we narrowed it down. Everyone had a bit of a vote, and we identified the top three. And it was if audiologists ask clients, how are you going socially and emotionally? How are you coping with your hearing loss? If audiologists provide general information on the social and emotional impacts of hearing loss to kind of validate or normalize that situation where it’s quite common for people with hearing loss to have social and emotional issues arise because of their hearing loss. So ask about it, provide general information, and then provide targeted information and support. And so that support can look like information, or it can look like connecting them to support groups or referring them to a psychologist or different aspects of support. So once we’ve identified our top three behaviors, we need to then ask, well, why aren’t audiologists already doing these things? What are the barriers? So then we ran a series of focus groups with audiologists across Australia to understand what are the barriers? And facilitators, why isn’t this already happening? And there was 115 different barriers, 115 reasons why audiologists aren’t doing this already. And look, some of them were fairly simple. Some of them were things like, well, I run out of time or I forget or I don’t know how to. Some of them. Were sort of a more deep motivation. There was this concern it’s not within my scope of practice or my clients might get offended if I raise the topic of mental health because it’s a taboo, or the perception that it’s a taboo topic, though that may be more age dependent. I think the younger kids coming through mental health is not so taboo, which is wonderful. People are the 20 and 30 year that I work with are much more comfortable having open discussions about mental well being, which I think is going to be wonderful for everyone’s mental health in the long term. And some of the other barriers were things that were just not within capacity of me to change. So things like there’s no government funding for audiologists to have these conversations and now I can’t shift that in a two year research project. So we certainly couldn’t tackle all 115 barriers identified. So what we did is, again, dotmocracy, we had a group vote and everyone put sticky dots and chose the barriers that were the most important. So we’re going to have the biggest impact and that also, if we resolve them, are going to have the biggest impact on improving outcomes. So things that were solvable and things that were going to have the best likely improvement for adults with hearing loss. And so we narrowed that down to, I think it was about 19 barriers. And so then following this behavior change wheel process, we look at the literature to see other people who have faced similar barriers. What kind of interventions have they developed? So if it’s a lack of knowledge or skill, then we do some sort of training. If it’s this feeling that it’s outside of my scope of practice, then we show them the existing Audiology Australia scope of practice or ASHA scope of practice to say, look, it is within your scope of practice to be asking about and supporting the social and emotional wellbeing needs of adults with hearing loss. If one of the barriers is about being concerned that the clients are going to be offended or not want to talk about mental well being, then we create videos like the one I just played earlier. That was one of the videos we created to show the audiologist. Actually, your clients do want you to go there. They do want to talk about these things. And now, look, it’s not all clients. Some clients don’t want to have these conversations. And so we certainly wouldn’t force it on a client. But by simply asking, it allows the client that safe space to then open up and have that conversation if they want to. So once we kind of identified the different intervention techniques that we could use, we then worked with key stakeholders to build the intervention and then to build an implementation program. So the intervention. Included training and education. It included what we call persuasion. So these sort of videos that help shift those stuck mindframes or help change motivation, it included a modeling arm. So we adopted this train the trainer approach and then had mentors within the clinical organization who were the, I guess, already had wonderful skills in this space. So that rather than just having me to come to the clinicians that we implemented this with, had internal staff they could turn to as well. And then one of the biggest things we did was this concept of environmental restructure. So we did things like change the template where they keep their case notes. So there was prompts to ask questions about emotional well being, the section where they put their client rehabilitation goals. Again, there was prompts to include goals linked to social and emotional well being, where I’m not sure if everyone does, but here in Australia it’s common to have GP templates. So the system pulls information from the case notes to generate a GP report for you. So we modified the GP template so it pulls some of the social and emotional aspects so that it helped them have that language available to them. And then we developed a whole suite of clinical tools. So some of them were discussion tools to help have that conversation. One of the barriers was I just don’t have the language skills. I don’t know how to ask are you okay? Without it sounding silly. So we developed these discussion tools to help audiologists have the discussion about mental wellbeing or social and emotional well being. We developed some fact sheets. So often clinics will have handouts on communication tactics, but we developed a series of handouts on the emotional impacts of hearing loss, social impacts of hearing loss, and how hearing loss can impact on sort of married couples and on relationships. And then we also had tools for the clinician. So we generated a list of local psychologists who have experience working with adults with hearing loss. And a couple surprising when you look we found a couple that even speak ausland sign language and a list of other kind of support options. So at least here in Australia, there are a couple of online, free online psychology services for cognitive behavioral therapy, for anxiety, depression, these sorts of things, and wonderful resources. And I’m sure the US. Has a lot of wonderful resources as well. So just developing those tools so that the clinicians had these sorts of resources at their fingertips as well. Yeah, that’s really interesting stuff. Is this something that’s scalable and turnkey? This program that you’ve developed, is there a place people can go to find it on a website or is it something developing? So we’re still in the process. The first. Paper that describes the intervention that we developed has just been accepted. A couple of days ago, very exciting for publication in the Implementation Science Communication Journal. But I did publish a preprint. So if you look for the I guess if you go into Google Scholar and search for the AIMER A-I-M-E-R AIMER intervention for mental well being or adults with hearing loss, it should come up or shoot me an email and I can send it through to anyone who’s interested. And in that paper, there is a link. Well, it’s a description of everything that we develop, but there’s also a link to another open access platform that has a copy of all of the tools that we developed. So certainly we’re not squirreling them away. I would love for everyone out there to use all the tools that we developed. Feel free to tweak them, adapt them, rebrand them, do what you want with them to use all of these clinical resources that we developed because the more we can get people thinking about and asking about and jumping into that space on social, emotional well being, the better. The second paper where we describe the implementation of how we tested it in a clinic and what that implementation looked like, I’ve just submitted. And so it’ll still be a few months until that one is published. But your question on scalability. I’m just in the process of writing a grant, looking to run a scale up. So we want to digitize and then run a scale up project. So engage with clinics across the country, across the world to see how other people will implement this program. So if anyone is interested in joining with me and being a site to have a go of implementing these things, please reach out to me because I would love some international collaborators on this grant that we’re currently writing. Yeah, that’s great. Well, in our show notes, we’ll have your email address and then we’ll also have references of all the papers that you’ve published in this area over the last few years so people can get see where those are. Many of them, I believe, are open access. Yeah, that’s all. That’s good. Yeah. And I think what’s really wonderful about this program is that it helps address as much as Amplification technology has improved over the years, I think we all know that there are limitations and that this type of approach that you’ve developed, I think is a great complement to traditional treatment for hearing loss. Yeah. So there have been a few papers recently that show that if someone people with hearing loss who also have developed loneliness, if you give them a hearing aid, for most people, their loneliness will improve somewhat. They’ll be a little bit less lonely, but it won’t fully. Cure their loneliness, they will still have some loneliness and likewise with anxiety and depression and all of these other sort of symptoms around their mental well being and social well being. And so I think it creates a real opportunity for us as audiologists to not focus purely on the hearing aid, but to show that we have a much broader service offering for our clients. So yes, we can fit them with the hearing aid to address the hearing deficit, but we also have this other suite of tools available to help them overcome some of the other aspects. So if you imagine someone who’s just lost their hearing, then a hearing aid fixing the hearing deficit will probably be sufficient because they still have the other kind of positive coping mechanisms, but because most people wait ten years or so. I know there’s different numbers floating around in the literature at the moment, but let’s say it’s still around the ten year mark until they actually get a hearing aid. Then over that ten years, they’ve slowly developed these negative coping mechanisms. So they’ve slowly developed these kind of bad behaviors of saying, oh no, I’m not going to go to bowls anymore because it’s too noisy at that place, or oh yes, I’ll go to the dinner party, but I’ll sit at the end and I’ll just sit back quietly and not participate. Or they’ve developed these behaviors. And we all know changing behaviors is really hard and people quite often can’t come up with the solutions themselves and implement those solutions themselves. And that’s where I think, as audiologists, we have a really important role to play in focusing not just on the hearing deficit, but on helping our clients identify the maladaptive coping behaviors that they’ve developed and helping them build. The skills and the behavior change resources to better cope with their hearing loss and to reintegrate socially which will then have that slow on effect of improving their emotional well being as well. I think that’s all tremendous and I look forward to seeing more of your work in this area as it becomes readily available. So one final question I have for you, and I think it’s related to when audiologists start talking about things like this, there might be a tendency to get some pushback from some of them saying that I’m not a psychologist, I’m not trained in this area, I’m a little bit uncomfortable. I’m just curious how you might address those type of concerns. Yeah, that’s a really good question. I would love to share this slide with you so I can show you and I want to describe this process here. So this model, so look 2030 more years ago, the world thought. That mental health was this linear scale. So you either had mental illness or mental wellness and it was just this one scale. But we now understand that we have a mental illness continuum, but we also have a mental well being continuum and they’re separate but related. So this graph is called this picture, this figure is called the two continuous model and it helps us to visualize where people sit within these two continuum. So if you look at the x axis, this is people with mental illness at one end and then people with no mental illness. So these are people who have gone to a psychologist or a psychiatrist and have been diagnosed with general anxiety disorder or depression, bipolar, schizophrenia. So there’s a very large book called the DSM 4 which lists all the different psychological disorders and mental illnesses. And people need to fit very precisely within these descriptions to be diagnosed as having a mental illness. And so then you can have no mental illness, but on this Y axis it’s up and down we have mental wellbeing. So at the top we’ll have high mental wellbeing, people who are flourishing, and down the bottom we’ll have low mental health or low mental well being, people who are languishing. And so by this we mean as humans we all have ups and downs. Even within a week or a year or even within the same day or hour, we can have emotional ups and downs. There can be things in our environment or if we haven’t slept well, I have young children, so there are certainly mornings I wake up and just feel emotionally distressed because of lack of sleep. And so it’s very normal for humans to sort of fluctuate up and down this Y axis. But there are certain things that can cause us to be more often in the lower half of this axes. So one example, like I said, sleep deprivation. But also if someone has a chronic hearing loss that is negatively impacting their ability to connect with their loved ones, to socialize and to have that fulfilling emotion of being socially and emotionally connected to the people in their life. They don’t necessarily have a mental illness, but they are going to be further down on the low mental health or low mental wellbeing aspect. And this is where our role as an audiologist really comes into play. So I want to stress and emphasize at no point should an audiologist be diagnosing a mental illness and at no point are we ever providing intervention for a mental illness. We’re focusing on this Y axis, on this general mental well being. If though that we find that one client that we’re working with is having extreme symptoms and is really not doing well for extended period of time, then we will talk to them about whether they are receiving professional help. For their well being concerns and we might point them towards perhaps talking to their GP about it, or ask them whether they would like us to write them here in Australia. We can refer to a psychologist. It doesn’t have to be a general practitioner. I’m not sure what that situation is in other countries. So, of course, work within your legal requirements of your own country where you’re working, but whether they need our support connecting them to a GP or a mental health professional, psychologist, psychiatrist? Yeah, no, please, go ahead. I was just going to say so what I love about this model is it helps us to see individuals for where they’re at. So, for example, I have a friend who lives with bipolar disorder, and many ten years ago, when we were a lot younger, he was struggling with it and so he had a mental illness, but he also had low. Mental health, mental well being. So he would have been in this sort of bottom quadrant on the left down here. And so he was struggling quite a lot in those days, but these days, he’s doing really, really well. He’s on the right medication, he’s getting enough sleep, he’s physically active, he’s in a great relationship, he’s got a great job, everything in life is going really well. So he still has a mental illness, he’ll have bipolar forever, that’s not going to change. But he’s now on the high mental well being axes and so you can see where this model allows us to track a person for where they’re actually at. So, as audiologists we are going to see clients who do have a mental illness. And so we need to think about what our role is there. If a client discloses to us that they have anxiety, depression, bipolar, then that’s wonderful that they’re disclosing it to us. It’s part of their case history. And so what we might say is we might ask them, do you feel as though that influences your hearing loss? Or does your hearing loss impact on how you experience your anxiety, depression or bipolar? Or we might say, does your bipolar or depression affect, do you think it’s going to affect your ability to take up and use a hearing aid? And so by asking questions to better understand their mental illness will help us to understand how we need to tailor our audiological rehabilitation program to meet their needs. If they’re highly depressed and they have very little motivation. Then our traditional approach of here’s a hearing aid, off you go, I’m sure you’ll be fine. That approach is not going to work with someone who has depression and really low general motivation. And so by understanding their mental health condition, we can personalize how we deliver our rehabilitation program. But then on the flip side, on this Y axis, by understanding how the hearing loss is impacting their emotional and mental well being, will help us to talk about what our service offerings are and how our different service offerings can help them to meet their holistic needs. I think that’s a wonderful way to explain the role of the audiologist, what we bring to the table, and what some of our limitations might be. So thank you so much for sharing that. Yeah, no worries. Now that we’re kind of wrapping things up here, Bec any final words of wisdom? Any final thoughts that you want to share with our audience before we sign off? Yeah, I guess I would just say that if you don’t have the skills and the confidence to talk about mental well being, you don’t have to. But if you want to, there are some wonderful places you can start to develop those skills. So you can look to local universities or local education groups, will have courses on counseling skills you can look to. There’s an international group called Mental Health First Aid, which was developed by researchers and is a wonderful course helping people develop those skills and have confidence in how to have those general mental wellbeing conversations. But I would also say the more you practice, the better you get at it as well. Like all things we do in our audiology practice, the more we do things, the better we get at it and the more comfortable we become. So I would say, yes, it’s within our scope of practice. Yes, it’s helpful for our clients. Yes, our clients want it, but it’s up to us to develop the skills and develop the practice to be doing this routinely so that we can support the holistic needs of our clients. Well, this has been an incredibly enlightening conversation. Thanks so much for spending some time with us. No worries. Thanks for having me. Brian. Dr. Bec Bennett, researcher clinician at the Ear Science Institute, Australia. Thanks for being on This Week in hearing.