Adults’ recollections of discussions with their audiologist: a qualitative study of what was and was not successfully communicated about listening difficulties

Abstract

Objectives

Some adults experience challenges in successfully communicating their listening difficulties to their audiologist, and report feeling that they are not always listened to or understood. This project examined adults’ recollections of discussions with their audiologist to explore (1) how adults report describing their listening difficulties and (2) information that adults report they do not communicate, or do not communicate successfully, to their audiologist.

Design

Individual semi-structured interviews were conducted. Interview transcripts were analysed using a template analysis approach.

Study sample

Fifteen adults who self-report listening difficulties, and who had previously consulted an audiologist.

Results

Four themes were identified from adults’ recollections of how they describe their listening difficulties: (1) situation or context of listening difficulties, (2) behavioural responses, (3) impacts of listening difficulties and (4) contributing factors. Adults report not always successfully communicating (1) emotional concerns and impacts, (2) descriptions of sound quality and (3) descriptions of changed listening experiences.

Conclusion

Results provide insights about the times when adults feel that communication with their audiologist is successful, or unsuccessful. The results are useful for informing interventions to help adults and audiologists communicate more effectively together. To further inform interventions, factors affecting adults’ communication should be explored.

Keywords:

• Listening difficulties
• qualitative
• patient-centred care
• rehabilitation
• clinician-client communication

Introduction

Aural rehabilitation is the primary intervention strategy for permanent hearing loss and aims to reduce the participation restrictions and activity limitations that are caused by listening difficulties. Aural rehabilitation involves the prescription of hearing devices, education, perceptual training and counselling (Boothroyd 2007). Hearing aids are the most common form of rehabilitation for adults with hearing loss, leading to improvements in quality of life and wellbeing for the individual (Chisolm et al. 2007). Despite improvements in hearing aid technology, hearing aid uptake and usage rates remain low (National Institute on Deafness and Other Communication Disorders 2021). One population-based study found that, in a sample of 707 adults with bilateral hearing loss, only 233 (33%) people owned hearing aids, and only 180 (25%) people used them habitually (Chia et al. 2007). Factors influencing hearing aid uptake and usage rates include audiologists’ communication styles, and elements of the therapeutic relationship, such as trust (Grenness et al. 2014; Laplante-Lévesque, Hickson, and Worrall 2010; Preminger et al. 2015). Communication that is patient-centred, allows audiologists to better understand and meet client needs, which is shown to positively influence hearing aid uptake rates (Poost-Foroosh et al. 2011). Whilst recommendations to improve patient-centred communication often focus on audiologists’ communication (Grenness et al. 2015a, 2015b), empowering patients to effectively communicate their experiences is also crucial.

Unsuccessful communication in audiology appointments

The World Health Organisation recommend increased patient involvement, and the establishment of a positive and ongoing relationship between patients and healthcare professionals, in their strategy towards integrated, people-centred health services (WHO 2018). In Australia, audiologists have expressed a preference for patient-centredness, with improved patient outcomes being linked to aspects of patient-centred care (Laplante-Lévesque, Hickson, and Grenness 2014; Michie, Miles, and Weinman 2003). Patients report that a fundamental ingredient for patient-centred care is that it is individualised (Grenness et al. 2014). A qualitative study found that patients wanted their audiologist to understand their listening experiences and that they valued hearing healthcare that was tailored and individualised to their needs (Laplante-Lévesque, Hickson, and Worrall 2010). For hearing healthcare to be individualised, audiologists need to understand each adult’s listening difficulties and goals. Therefore, it is important that adults successfully communicate their listening experiences to their audiologist. For this communication to be perceived as successful, adults should feel that their listening experiences have been listened to and understood by their audiologist. However, evidence shows that this does not always occur, with adults reporting that they do not always feel heard during their audiology appointments (Ekberg, Grenness, and Hickson 2014; Galvin et al. 2023; Grenness et al. 2014).

Unsuccessful communication can occur when patients are not provided with clear opportunities to share their concerns. A descriptive review focused on communication between audiologists, patients, and their family members during initial audiology consultations by analysing recordings of the appointment (Manchaiah et al. 2019). Findings show that overall, audiologists tend to lead appointments and control the history-taking phase of the appointment (Ekberg et al. 2015; Grenness et al. 2015a), which means that patients may not have the opportunity to communicate the things they would like to. Sometimes, audiologists did not respond appropriately to patients’ concerns, particularly when those concerns were of a psychosocial nature (Ekberg, Grenness, and Hickson 2014; Manchaiah et al. 2019). A lack of alignment between the concerns that patients raise, and the audiologists’ response to them, may also contribute to patients’ perceptions of their communication being unsuccessful.

Another way in which unsuccessful communication can occur is if patients do not disclose their listening difficulties to their audiologist, however, patient non-disclosure in an audiological context remains unexplored. In a broader healthcare context, a study of 2499 adults in the USA aged ≥ 50 years found that 61% may avoid disclosing relevant information to any medical care giver, such as a doctor, physician’s assistant or nurse (Levy et al. 2018). In a group of 593 patients who were currently experiencing, or had recently experienced, psychological problems, 36.9% reported not disclosing these to their doctor (Bushnell et al. 2005). To improve the successfulness of patient-audiologist communication, it is important to investigate adults’ perspectives about what they may not be disclosing to their audiologists. It is not possible to identify the things that adults do not disclose during their appointments by only conducting observation studies of real audiology appointments. To understand the concerns, if any, that adults are not disclosing to their audiologist, they should be directly asked about these.

Understanding patient perspectives

Both patients and audiologists recognise the patients’ expert perspective of their experience and the value of this information being shared at appointments (Grenness et al. 2014; Preminger et al. 2015). A co-designed clinical tool, ‘Chloe’s card’, was developed with parents of children with medical complexities and healthcare professionals (Marino et al. 2023). The tool allows parents to document the topics and questions they would like to discuss with the child’s healthcare professional. Despite positive overall feedback, some healthcare professionals found the tool’s scope was too broad. They also felt that they needed more guidance about how to use the tool, to improve the success of its implementation. Parents found the tool useful as it helped them to start a conversation with their healthcare professional and made them feel heard. Providing patients with tools that facilitate successful communication by supporting them to describe their concerns is one way to empower patients and improve their experience during appointments. Identifying the things that adults feel they are not successfully communicating to their audiologist, can inform the development of clinical tools which support them to communicate more effectively with their audiologist.

Research gap and aims

It is essential to involve the target users during the design process of clinical tools to ensure that the end product is useful, acceptable and feasible to them (Mummah et al. 2016). The first step of this process is to empathise with target users and to understand their needs. Previous literature provides descriptions of patients’ experience of listening difficulties and the impacts of these difficulties (Backenroth and Ahlner 2000; Barker, Leighton, and Ferguson 2017; Bennett et al. 2022; Choi et al. 2018; Claesen and Pryce 2012; Hallberg and Barrenäs 1995; Hass-Slavin, McColl, and Pickett 2005; Heffernan et al. 2016; Heffernan, Withanachchi, and Ferguson 2022.; Holman, Ali, and Naylor 2023; Pike et al. 2022; Preminger and Laplante-Lévesque 2014; Pryce 2006; Wänström et al. 2014). There are also studies which describe patients’ experiences of audiology appointments (Grenness et al. 2014; Laplante-Lévesque, Hickson, and Worrall 2010; Mealings et al. 2020; Oosthuizen et al. 2022; Pryce and Wainwright 2008 Pryce et al. 2016,). A recent scoping review was conducted to identify research which examined how adults describe their listening difficulties (McNeice et al. 2023). Existing studies demonstrate that adults describe factors and contextual details that contribute to their listening difficulties, their own behavioural responses to their listening difficulties, and the impacts of their listening difficulties. All of the studies identified in the review explored how adults described their listening difficulties in a research context only. There were no studies exploring how adults would like to describe their listening difficulties in a clinical setting. Moreover, there were no studies exploring whether adults had disclosed their listening difficulties and whether adults perceive successful communication of these difficulties with their audiologist. Exploring adults’ recollections of discussions with their audiologist, focusing on these aspects of communication during audiology appointments, is one way to promote patient-centred communication. Therefore, the present study aims to explore how adults report describing their listening difficulties and concerns. This provides important contextual detail that is needed to explore the information that adults report they do not communicate, or do not communicate successfully, to their audiologist.

Methods

This qualitative study involved participants spending two weeks paying heightened attention to their listening difficulties in everyday life and then participating in a semi-structured interview. The study was conducted in 2022 in Victoria, Australia and was approved by The University of Melbourne Human Research Ethics Committee (Reference number: 2022-22396-24732-3).

Participants

Participant inclusion criteria were: (1) ≥18 years of age, (2) having previously consulted an audiologist regarding their listening difficulties and (3) comfortable with completing spoken interviews in English. Participants could be located anywhere in Australia and participate in the study remotely. Printed flyers containing information about the study were displayed in the waiting rooms of audiology clinics, and at other organisations hosting eligible adults. Recruitment also occurred via word of mouth and researcher contacts.

Purposeful sampling was used to recruit participants who may meet the inclusion criteria, however no adults who expressed interest in participating were excluded. When deciding when to finish the data collection phase, the heterogeneity of the sample was considered. Variation in the following participant characteristics was desired: age, gender, hearing loss, hearing device usage, and a self-rating of how positively participants viewed their previous interactions in audiology appointments. The recruitment, data collection and data analysis phases were conducted simultaneously, therefore participant characteristics were known throughout the recruitment phase. Towards the end of the recruitment phase, the authors noted there was variation in the participant characteristics and no changes were made to the recruitment approach. All participants were provided with the study’s plain language statement and gave informed consent. Fifteen participants were included, and their characteristics are summarised in Table 1, reflecting variation in the sample.

Table 1. Summary of participant characteristics (n = 15).

Participant characteristics
Gender
Male (n)	7
Female (n)	8
Devices
No devices (n)	4
Hearing device(s) user (n)	11
Age (years) Mean; range; standard deviation	58.6; 18–76; 20.6
RHHI-S^a score (maximum possible score = 40) Mean; range; standard deviation	21.3; 0–40; 12.0
Attitude towards hearing devices
Negative (n)	2
Neutral (n)	2
Positive (n)	11
Attitude about previous interactions in audiology appointments
Negative (n)	2
Neutral (n)	4
Positive (n)	9

^a Revised Hearing Handicap Inventory-Screening (RHHI-S)

Procedure

Once a participant had provided consent, they were emailed a pre-recorded video and a link to a series of demographic questions (described below). At this time, participants were also provided with contact details for author ZM and encouraged to use these to ask any potential questions they had. Two weeks later, author ZM conducted an individual semi-structured interview with the participant, which allowed the participant to share their experiences in their own words (Knudsen et al. 2012). All interviews were held at the participant’s preferred time and date. Participants were given the choice to have their interview conducted online or face-to-face, dependent on convenience and which mode they were most comfortable with. All but one of the interviews were conducted in an online mode, using Zoom as the video conferencing platform. The single face-to-face interview was held at the University of Melbourne. All interviews were held in a private meeting room and were recorded using Zoom. The face-to-face interview was audio-recorded only, using Zoom, at the participant’s request. Automated closed captioning was enabled during the interviews to support effective communication. It was anticipated that the interview duration would be between 30 minutes to 1 hour. Interview durations ranged from 23 minutes to 1 hour and 45 minutes, with a mean interview duration of 44 minutes. The interview duration was determined by the participants and the amount they contributed for each question, with the interviewer not truncating any responses. Participant recruitment ended when data saturation was reached, meaning that no new themes or codes were identified from the data.

Materials

A pre-recorded video was sent to participants featuring author ZM explaining the purpose of the study and encouraging participants to spend the next two weeks of their day-to-day life with a heightened awareness of their listening difficulties. When adults are encouraged to self-reflect on their listening needs before their appointment, they are better prepared to share and communicate these to their audiologist (Heffernan, Maidment, and Ferguson 2023). Encouraging participants to spend two weeks with a heightened awareness of their listening difficulties was intended to improve their capability to communicate these to the interviewer and provided participants the opportunity for reflection prior to the interview. The Qualtrics platform, an online survey creation platform, was used to collect demographic information about age, gender, hearing device usage, feelings towards previous audiological interactions, and self-reported hearing ability using questions obtained from the Revised Hearing Handicap Inventory-Screening (RHHI-S) (Cassarly et al. 2020). The RHHI-S was used to provide the interviewer with an initial overview of participants’ listening difficulties, and to help frame the interview questions. For example, ‘you mentioned that you experience difficulty in [these situations]. Would you like to expand on any of these or talk about additional situations where you experience listening difficulties?’ One participant received the minimum possible score of 0 on the RHHI-S, indicating no hearing handicap. Despite this score, the participant met the inclusion criteria and was included in the study. During their interview, the participant revealed that they were previously unaware of many of their listening difficulties. However, they noted that if they were to retake the RHHI-S questionnaire after spending two weeks with a heightened awareness of their listening difficulties, they thought they would recognise a higher level of hearing handicap.

The interview guide was developed through a series of discussions between all authors and was designed to elicit information that would answer the research questions. As a group, the authors have experience as practicing clinical audiologists (BT, DT, KG, ZM), experience conducting research with adult participants with hearing loss (BT, DT, KG) and experience conducting qualitative research (CS, BT, DT, KG). Once developed, the interview guide was piloted with five consumer advisors who did not participate further in this study. The consumer advisors were all adults who had previously attended audiology appointments and had also participated in a separate study led by authors KG, BT and DT in which they had shared their thoughts and experiences related to listening difficulties. Changes to the interview guide were made in response to feedback from the consumer advisors related to the content and clarity of some of the questions. An example of a change made as a result of the pilot interviews was to clarify that participants could refer to any previous audiology appointment, rather than only the most recent appointment with their current audiologist. The final interview guide can be found in Appendix 1 (Supplementary Material). All questions were asked of each of the participants. If the participant asked for clarification, the interviewer (ZM) rephrased the question. Probing questions were used throughout the interview to encourage complete answers and to ensure that the participant’s perspective would be accurately understood. Interviewer ZM had a list of prompts to use in these cases, for example, ‘Could you describe this in more detail for me?’. The interview guide included an introduction script and some introductory questions that were anticipated to be relatively straightforward for the participant to answer. The guide also included questions about the listening difficulties that the participant experienced and how they would describe these to their audiologist and questions about what the participant did not say to their audiologist. For example, ‘Are there things that you are aware of, but that you leave out when talking with your audiologist about your listening difficulties?’

Data processing and analysis

The transcripts automatically generated by Zoom were checked for accuracy and edited by author ZM. Any potentially identifying content was excluded from the written transcripts. The transcripts were uploaded to QSR NVivo software (Version 1.6.1). The study design and research questions were best conceptualised and presented in terms of domains, rather than using a more exploratory theme development process. Template analysis is a form of thematic analysis which allows flexibility in terms of how themes are generated, and allows themes to be more descriptive in nature, which suited the purpose of this analysis (Brooks et al. 2015). It also allows themes to be identified both prior to coding, and during the coding process. During template analysis, a coding template is developed early in the data analysis phase and is iteratively refined. The coding template is used to make sense of the data and is not the product of the template analysis. The steps required to complete the template analysis are described by Brooks et al., (2015) and described in further detail by King, in Symon and Cassell (2012).

Author ZM familiarised herself with the data and created some initial data-driven codes. Individual text excerpts could be coded to multiple codes. These codes were later clustered into groups. Author ZM searched for themes and considered how categories interacted and how they may combine to form an overall theme. Mind maps were used to visualise the data and to explore connections between themes, and the codes that were nested below them, across both research questions. Data analysis was led by author ZM, however regular meetings were held with all authors, during all stages of analysis, to discuss themes and extracts from the transcripts. Author reflexivity, and how this may influence interpretation of the qualitative data obtained, was recognised during data analysis. For example, author ZM has experience as a clinical audiologist and so was already alert to the types of listening difficulties that patient report, and therefore may have reflexively paid more attention to listening difficulties which are less commonly raised during audiology appointments. This reflexivity is a strength of the analysis because it helped to ensure that important and novel findings were recognised and explored in depth. The interviewer ZM did not have an existing relationship as an audiologist with any participants, however it is still possible that the participants may have been reluctant to describe their experiences of interactions in audiology appointments in a negative way due to not wanting to cause offence. To encourage them to fully share their experiences, participants were advised in the plain language statement, and again at the beginning of the interview, that their responses would be de-identified. All authors independently coded one of the interviews (Participant 07), and then met to discuss their interpretations. This process encouraged a shared and more complex understanding of the data by including multiple authors’ perspectives. The candidate themes were reviewed by all authors to ensure coherence of the extracts for each theme. The themes were also considered in relation to the data set as a whole and revised as required. After this, the themes were defined, named, and reported in the results section.

Results

How do adults report describing their listening difficulties?

Participants were asked to describe the listening difficulties that they experience; more specifically, they were asked how they would describe their listening to an audiologist in a clinical appointment. Four themes were identified from participant reports: (1) the situation or context of their listening difficulties, (2) factors that contribute to their listening difficulties, (3) the impacts of their listening difficulties and/or (4) behavioural responses to their listening difficulties. Refer to Figure 1 for a summary of how adults report describing their listening difficulties to an audiologist in an appointment. Some participants discussed the importance of providing accurate and detailed descriptions of listening difficulties, in relation to all themes. They also thought that patients have a responsibility to be honest about their experiences, so that the audiologist can do their job well.

Figure 1. Template analysis results of the four themes and subthemes about how adults report describing their listening difficulties.

Describing the situation or context of listening difficulties

Participants reported describing the situations in which they experienced listening difficulties to their audiologist. Sometimes this was in a list format, or they would expand on each situation with more depth.

I would have described them in sort of the shopping list and just said, these are the areas I struggle with. [P02]

I usually run through everyday conversations in a quiet area, in a loud area, and then music because I listen to a lot of music so that’s pretty important. Being able to listen to media and things without subtitles, and then being able to hear other noises like cars coming up behind you are kind of the main things that I touch on in my appointments. [P08]

Participants reported describing challenging listening situations to the audiologist, such as communicating in background noise in a restaurant or café, listening to someone speaking from a different room, or listening where room acoustics were poor. They reported describing listening difficulties in the workplace, such as during meetings, or when listening to amplified speech such as via a telephone, television, or a loudspeaker system in a theatre. They reported describing difficulty with general speech, such as when it was unclear. Some participants reported that they described difficulty listening to music. One participant reported that they would describe to the audiologist future listening situations in which they expected to experience listening difficulties.

Looking forward to things that I’m going to be doing in, you know, 6–12 months’ time, and how that might impact things…I’d be talking about different options for that as well. [P01]

Participants reported describing a need for sound clarity rather than volume to their audiologist, in relation to hearing aid adjustments.

It’s more of a clarity rather than a volume issue. I feel like that’s a really important one. That if I didn’t touch on it, it would definitely impact my care. [P08]

They also described how some sounds or noises were bothersome, even when they did not interfere with communication.

It’s that background noise, the noise of trams, the noise of traffic. The sense that you’re in a situation where you’ve got to have the hearing aids at that level to talk to people, but I live near [road name], so if I walk along [road name] with all of that traffic noise, at times I just want to turn them right down and not hear it. [P07]

Describing factors that contribute to listening difficulties

Participants reported that they would identify for the audiologist the factors that contribute to listening difficulties. These could be related to the speaker’s communication, such as when the speaker was yelling, speaking quickly, speaking softly, or decreasing the volume of their voice towards the end of sentences. Participants also reported describing certain voices as being more challenging for them, such as voices with accents, of a certain pitch, of younger speakers, or softly spoken people. Speaker communicative behaviours contributed to listening difficulties when this led to limited visual cues. This occurred when the speaker was facing a different direction from the person with hearing loss, was walking beside the person with hearing loss, or was in front of a window such that they become a silhouette. Face masks were also frequently raised as a barrier to using visual cues.

I guess, in the last few weeks, just how much I rely on lip reading. When people are still wearing masks, that was something I hadn’t realized I’d struggled with before but definitely was quite apparent. [P02]

One participant noted that their own characteristics such as their willingness to engage in conversations could also be a factor that contributed to listening difficulties.

And to some extent that might mean me, learning to do, or to listen differently. I do find one of the difficulties is that if I start to not hear or not understand, then I pull right away. And I just am not participating, and instead of saying well I can come back into that conversation, it’s easy to walk away from it. That’s not necessarily a good thing. [P07]

Listening technology contributed to listening difficulties where it was not used or not available. Participants reported using movie theatres as a situational example where Bluetooth streaming was not available, and it was not appropriate to use their phone to make hearing aid adjustments.

I can use Bluetooth to work on the iPad or to listen to the TV. The frustration is that you get used to doing that at home. And then when you go out into something like the theatre, you don’t have that capability, so one of my big frustrations is that I don’t hear dialogue at the theatre very well. [P07]

Describing the impacts of listening difficulties

Participants reported describing the impacts they experience from their listening difficulties. Impacts of listening difficulties were categorised as being physical, emotional, social, or functional impacts. The physical impacts of listening difficulties were increased fatigue and increased loudness of tinnitus. Increasing fatigue levels resulted from increased listening effort.

I’d say probably even now there’s still a level of fatigue where, because I’m trying quite hard to listen attentively that I probably feel that I can’t listen as much… my energy levels get depleted a bit quicker, if I’m say going out to party. [P03]

The emotional impacts of listening difficulties were frustration, stress, embarrassment, depression or a sense of loss and isolation.

I used to get annoyed that I had to ask people to speak up and it wasn’t just at the people, I was annoyed that I had to do it because I had this difficulty. Frustration is probably what I felt and then that sort of morphed into anger… anger with myself more than anything. [P10]

Sometimes it’s just a bit embarrassing if you don’t hear someone and you have to ask them to repeat, three or four times. [P01]

I rely entirely on my right ear for that [pitch perception], although that’s a bit impaired as well. So, that can be quite stressful if you’re trying to conduct an orchestra, hear what those middle range instruments are doing. [P13]

Participants also described emotional impacts in the form of concern about future listening situations. For some, this was related to concern about the difficulty they would experience should their hearing deteriorate further; for others it was about being in a future listening situation and experiencing listening difficulties.

See, music is what I do. And if I lost that, it would be 90% of my life gone, so there’s fear associated with it. A fear of the future, even though that’s not a rational thing. [P13]

It also concerns me if the long-life batteries go flat when I happen to be on a three-week holiday interstate or something. I don’t know what I’d do, whether I’d just have a silent holiday… I don’t know the answer to that one. [P12]

The social impacts of listening difficulties involved participants avoiding situations or becoming disengaged due to their listening difficulties.

Going out to a restaurant or trying to have a conversation next to a busy street was very difficult. So, I tended to avoid those situations. I would not go out with my friends as much because I couldn’t hear them in a noisy environment. [P08]

Sometimes you just nod and smile because you’ve lost the thread of a conversation entirely. You’ve got to say six times, what did you say? So, you give up doing that, because it’s just, you can’t ask that. You become detached from what’s going on. [P13]

One participant described how it was very important to them that others did not misinterpret their listening difficulties as disinterest.

I don’t want to appear, I don’t know, aloof or just not interested, it’s just I can’t hear, so it’s hard to convey that I think. [P02]

Participants described how they perceived others in their communication network to lack awareness about listening difficulties, or to lack an understanding about their experiences and communication strategies to manage and/or minimise listening difficulties.

You know, people not facing the front, and people not being aware. I think [that] people who don’t have a hearing loss, often are completely unaware of all those things that affect people who have got a hearing loss. They’re not aware of, say, you know, turning off the background music, asking people to speak clearly, all of those things. [P12]

Participants reported describing functional impacts of listening difficulties such as not hearing alerts, not hearing the phone, not hearing or mishearing speech and difficulty with sound localisation.

I could absolutely sleep through the smoke detector, and I know it’s up to date, but I’ve been known to sleep through doorbells and telephones, all sorts of things. [P12]

Another thing is loss of sense of direction. You put the hearing aids in, and someone will speak somewhere, and you don’t know where the voice has come from. You can’t tell whether it was to your left or your right or from behind you. [P13]

The other situation that I had issues with because it was single-sided, I couldn’t hear on one side, so it was kind of dangerous while crossing the road. [P03]

Describing behavioural responses to listening difficulties

In some instances, when asked about their listening difficulties, participants reported that they would describe to their audiologist their own behavioural responses to listening difficulties. These could be repair strategies after communication breakdowns or coping strategies for their listening difficulties. Some repair strategies were to ask for repeats or requesting a change in communication style.

If I were meeting one-on-one, and that person was quite soft, I would let them know that I’m hard of hearing. And they would either crank it up a bit, or I would just turn my best ear to them. [P04]

Participants also discussed optimising the signal by positioning themselves within an environment. They described sitting closer to those they communicate with, sitting away from background noise, or positioning themselves so that their preferred ear is closer to the speaker.

Cafes and restaurants often are playing music. Or you’ll be seated beside a table that’s really noisy. And the position in the table - if I’m going to a family function which has got quite a few people, I’ll try and get there early to position myself. [P12]

If I’m going to go to a bar or something like that, I will strategically position someone that I plan on having a conversation with, on my good ear. [P03]

They also reported optimising the signal through their hearing devices, and in some cases being reliant on them for daily functioning. Participants expressed concern, should hearing devices be unavailable to them.

I’d say I couldn’t live without them. I think hearing aids are essential for me… she [a friend] said ‘I can’t talk to you until you’ve put your aids in because’, she said, ‘you don’t hear me, you haven’t got a clue what I’m saying.’ I don’t hear birds and things without the aids, so I know I need them. [P07]

Participants described increasing their use of visual input in response to listening difficulties. The unavailability of visual cues was also described as a factor that contributes to listening difficulties.

Talking to people is getting better, but I find that I still need to look at people, because my brain’s still adjusting to getting input on both sides. [P08]

Concealing listening difficulties initially, prior to the period of help-seeking, was sometimes a response to listening difficulties.

When the hearing problems first started, I was a professional orchestral player. And if you confessed that you were having difficulty with your hearing, your colleagues immediately downgraded you in their minds. And so, no one ever confessed to having a problem with their hearing. [P13]

What information do adults report that they do not communicate, or do not communicate successfully, to their audiologist?

The research question was constructed to capture any information that patients felt had not been communicated to, and/or understood by the audiologist. This includes details that participants reported that they may have omitted when communicating with their audiologist, as well as information that participants had difficulty describing, or information that they did not feel that they had been able to adequately describe. Some participants reported that they did communicate, and successfully so, all the information that they intended to. Three themes were identified about what adults do not successfully communicate to their audiologist and these are described in Figure 2.

Figure 2. Results showing three themes about the information that adults report is not communicated, or not communicated successfully, to their audiologist. Results also identified two themes about information that is not communicated successfully to adults.

Emotional concerns and impacts

Adults reported that they did not always communicate listening difficulties that they expected may cause them to become emotional or upset during their audiology appointments.

I think if it’s something that was emotionally upsetting, I probably wouldn’t discuss it. I get quite emotional about not being able to hear my family’s voices in particular. So, one of my nephews I couldn’t hear him talking to me properly. Having to discuss that with my audiologist and saying I can’t hear his voice is quite upsetting because it makes it real when you say it, like you’re acknowledging that that’s what’s happening rather than glossing over it. [P08]

Adults sometimes avoided describing the emotional impacts they experienced due to their listening difficulties to their audiologist for various reasons. An example of an emotional impact that an adult may not talk about with their audiologist was the fear of further hearing loss. Adults discussed how they would consider the relevance of the emotional impacts of their listening difficulties and how helpful it would be for the audiologist to hear about these impacts when deciding whether to discuss them in appointments.

I probably wouldn’t talk about the mental and emotional stuff because they don’t have the time or the expertise to listen to it anyway. [P09]

Sometimes, adults reported not describing the emotional impacts of conditions associated with listening difficulties to their audiologist.

I’d tell the audiologist about tinnitus. Eventually. But I’m not sure that I’d go into the effect it has on your mood or your outlook on life. I wouldn’t talk to an audiologist about that. [P13]

Adults sometimes attempted to describe the emotional impacts of listening difficulties, however, these were not always successfully communicated. They experienced difficulty conveying their thoughts in a way that they perceived their audiologist would understand, sometimes because the audiologist had not had similar experiences.

I guess the one thing that I would have trouble describing would be some of that, like internalized stigma that I’ve had for a long time. He [audiologist] doesn’t wear hearing aids, and being a child and having a hearing loss, you’re often singled out for a lot of different reasons. So, for a long time I think I hid that, and I don’t think that he understands that very well. [P01]

It’s hard to explain to someone who has full hearing what it’s like at times. [P07]

I guess the only thing that might be difficult to explain is the emotional side of having difficulty in a certain situation. Because it can’t really be solved. When you’re talking about being in a group situation, and there’s lots of conversations bouncing around, not being able to engage in that, the emotional side of it, feeling a bit left out is harder to explain to an audiologist because it’s harder to address, I guess. [P02]

Descriptions of sound quality

Participants reported that they did not always provide detailed descriptions of their listening difficulties and would instead provide a list of the different situations in which they had difficulty. They noted that they did not communicate additional details that, with hindsight, they think could have been helpful for their audiologist.

The way I’m describing it…sometimes I feel like I’m rattling off a shopping list…but then, in the last two weeks I’ve gone, actually that’s not very helpful. It makes more sense to elaborate a little more. [P02]

Participants reported that, even when they would have liked to describe the sound quality to their audiologist, they did not always successfully communicate this. This sometimes led to concern that their descriptions of listening difficulties would lead to poorer hearing outcomes if they were not interpreted correctly by the audiologist.

I find it really difficult to explain the background noise I get when I’m using my hearing aid. I don’t know the right words to describe it accurately, because there’s a difference between crinkly and rustly and buzzy. There’s a huge difference between those kinds of sounds. But I can’t always pinpoint exactly what it is…I’m worried that the word is not correct for what I’m hearing, and I don’t want to convey something that is not what I mean, because it might change the outcome. [P08]

One participant explained that they had difficulty evaluating whether they experienced benefit with hearing aids, meaning they felt unable to accurately communicate their listening experience to their audiologist.

It’s so hard to tell because if we’re out at dinner and there’s three people opposite me, and a person on either side of me…when I’ve got my hearing aid, do I hear the people on my left better? It’s really hard. I don’t know. [P14]

Descriptions of changed listening experiences

Participants did not always successfully communicate changes to their listening experience to their audiologist. For example, participants did not always successfully communicate about how their listening experience changed when hearing devices were adjusted.

We have interchanges when she’s trying on new hearing aids, and she’ll say ‘what’s that like? Try this, now try this’, and she’s flicking switches on a computer to get it to do different things. And I can hear that there’s a change in the quality or the volume or something of the sound. I find it very hard to describe what that change is. It’s just a shift. It’s a different ambience in the sound. To answer her questions, I’d have to wear them for a week and know how I responded to people talking and how I responded to music, so I do have difficulty sometimes explaining that to the audiologist. [P13]

One participant described how they would not express their concerns to their audiologist about how their hearing aid(s) sounded directly after fitting or after adjustments were made.

I noticed that when I was first getting my hearing aid fitted, I would kind of leave out issues with how loud things were because I figured that, it was just going to be me getting used to things. But then I realized, no things are just actually too loud. And I needed to bring that up with them. [P08]

Another participant reported describing their worsening listening difficulties to their audiologist but not feeling that the audiologist had understood these due to their experience not aligning with the audiometric results.

I felt that I was not on top of things, and they said, no, everything is very similar to what it has been. And that’s tended to be what’s happened. I’m not sure if that’s an indicator of me getting used to the current hearing aids and beginning to think that they need something more. [P07]

Information not successfully communicated to adults

Although no interview questions asked about what audiologists were not communicating, participants spontaneously described the need for more information from their audiologist.

Device options and features

Participants described their need for increased education about device options and features to be incorporated into the audiologist’s recommendations for hearing aid fitting.

I probably would have liked to have more discussion about the types of hearing aids that there were… the various costs…and there could have been more discussion about options, rather than, here’s what I think best for you. The first ones without the mould certainly weren’t. [P05]

So, I think that the technology and the hearing aid issues, as to what hearing aids I have, and what’s available and ways technology can be easier for me or support me or help me… where I can get information. [P12]

I’d like to know what choices there are on the market regarding suitable hearing aids for me. I’m remarkably ignorant really. As I said, I don’t know what I don’t know. [P12]

Hearing aid management

Adults also wanted audiologists to review their needs over time and expressed a need for more education on hearing aid management.

Even if in the past we’ve addressed them, just to reiterate, and ask again, I think is really important, because things do change. Initially when I got the hearing aid, I didn’t want any ALDs [assistive listening devices] or anything like that, and then I actually thought about it and I realized, I did want an alarm clock to help me wake up in the mornings. So just re-addressing those things I think would be really helpful. [P02]

To some extent, when I’ve had to change aids, it’s been ‘Here are your new ones. Goodbye.’ I think we need a little bit more education about how to use them. I’ve worked out by trial and error that that’s a good program for this situation, but it’s not always the right program I would think. So, it’s a bit of training that way. [P07]

Discussion

In this study, adults were interviewed about how they would describe their experienced listening difficulties to their audiologist. Adults reported describing situations, impacts, contributing factors, and their own behavioural responses related to listening difficulties. They often reported describing their listening difficulties in rich detail and elaborated on some aspects such as the emotions they experienced due to their listening difficulties. These findings add to the literature describing the listening difficulties and impacts of listening difficulties experienced by adults (Barker, Leighton, and Ferguson 2017; Holman, Ali, and Naylor 2023; McNeice et al. 2023; Shukla et al. 2020; Vas, Akeroyd, and Hall 2017; Ventry and Weinstein 1982). In a previous study in which adults with hearing loss were interviewed about their lived experience with hearing loss, adults explained the consequences of hearing loss, such as exclusion or fatigue, as well as emotional impacts they experienced, such as frustration or grief (Bennett et al. 2022). Despite the individualised nature of listening difficulties, many situations described by adults in the present study were consistent with those previously reported in the research literature and will not be surprising to practicing audiologists. An unexpected finding was that adults may consider future situations where they might experience listening difficulties. This was spoken about in relation to selecting a hearing device and receiving hearing aid adjustments that will be helpful to the future situation. Greater self-reported hearing difficulties and communication difficulties are known to be an important factor which increases hearing aid uptake rates (Knoetze et al. 2023; Meyer, Hickson, and Fletcher 2014; Pronk et al. 2017). Adults may consider their future listening needs when deciding whether to proceed with hearing aid fitting, or to avoid the inconvenience of returning to their audiologist for multiple appointments to receive hearing aid adjustments. When discussing adults’ listening difficulties, audiologists could frame questions to ask about both current and anticipated listening difficulties.

It was noted that, in response to questions about the listening difficulties they experience, some adults instead described the factors that contribute to their listening difficulties, or their behavioural responses to listening difficulties. Identifying factors that contribute to listening difficulties can be valuable for adults as communication strategies can be gainfully employed and can support discussion about realistic expectations about hearing ability with hearing devices. Audiologists should be aware that adults may respond to questions about listening difficulties with explanations of their behavioural responses. Audiologists can make inferences or use follow up questions to gain an understanding of the patient’s listening difficulties and listening needs. Behavioural responses to listening difficulties reported in the present study align with those described by adults with hearing loss, with common responses being avoidance, attempts to control or optimise the listening environment, and using repair strategies, such as asking for repeats (Bennett et al. 2022).

When adults reflected on how they describe their listening difficulties to their audiologist, they reported details that they do not always communicate or do not communicate successfully. Adults reported that they did not always describe the emotional impacts of listening difficulties, and their effect on emotional wellbeing, to their audiologist. The importance of a holistic approach to audiological care is well-recognised and current recommendations highlight the importance of considering patients’ social and emotional wellbeing during aural rehabilitation (Timmer et al. 2023). Conversations about emotional impacts of hearing loss may be initiated by both audiologists and adults with listening difficulties, however, some patients may require their audiologist to explicitly provide an opportunity to discuss these emotional impacts. When audiologists routinely ask adults about their mental wellbeing, it increases the likelihood of engaging in conversations about the emotional impacts that they experience (Laird et al. 2023) Participants in the present study emphasised that whilst discussions about emotional concerns are important, they should be optional to engage with. Audiologists should acknowledge the relationship between listening difficulties and emotional wellbeing and give space to discuss this during appointments. This strategy ensures that adults feel that there is time to raise concerns and helps them to understand the relevance of discussing emotional impacts of listening difficulties with their audiologist. Opening a door to discuss emotional wellbeing will help ensure that adults feel comfortable in raising their concerns if they choose to.

Another aspect of listening difficulties that patients sometimes did not communicate about, or did not successfully communicate about, was aspects of the sound quality they experienced. Sometimes, adults did not communicate problems they experienced with sound quality because they assumed that they would acclimatise. They also reported difficulty describing the sound quality that they experienced and expressed concern about the potential for their audiologist to misunderstand and therefore make inappropriate hearing aid adjustments. This is a reasonable concern because common sound quality descriptors vary between and within patients (Caswell-Midwinter and Whitmer 2021). However, it is unlikely that audiologists would make entirely erroneous adjustments based on these descriptions as there is high agreement amongst audiologists regarding the recommended adjustments to resolve common patient descriptors of sound quality (Jenstad, Van Tasell, and Ewert 2003). Whilst the particular word choices to describe aspects of sound quality are important to patients, the difference may be inconsequential to audiologists, who may choose to make similar adjustments in response to a range of sound quality descriptors. To alleviate patient concerns regarding inappropriate adjustments, patients could be educated about the various types of adjustments available, whilst also emphasising that adjustments are not permanent and can be reversed. They could also be provided with a vocabulary list of descriptors to use if they are having difficulty finding a word to accurately represent their experience (Jenstad, Van Tasell, and Ewert 2003). Additionally, real-world monitoring and documentation of patients’ listening difficulties may alleviate patients’ concerns about their ability to effectively translate and articulate their listening experiences and could assist audiologists in troubleshooting and outcome measurement (Caswell-Midwinter and Whitmer 2021; Timmer, Hickson, and Launer 2018).

Results from this study show that there are things that adults do not successfully communicate to their audiologist across a number of domains. It is important for audiologists to use questions and prompts that support adults to communicate more effectively about their experiences. Using open-ended questions could potentially support adults to communicate their listening difficulties more successfully, and in a way that they feel can be understood by their audiologist. Open-ended questions are generally recommended when exploring patients’ listening difficulties and concerns, allowing patients to focus on aspects that are most important to them. Patient narratives involve patients telling their stories in their own words and assist practitioners in understanding patient experiences (Roter and Hall 2006). However, the opportunity for patients to provide their narrative does not always occur, with audiologists often leading appointments and not routinely using open-ended questions to begin appointments (Ekberg, Grenness, and Hickson 2014; Grenness et al. 2015a, 2015b). Bergey (2017) suggests that audiologists could incorporate patient narratives into clinical practice by using inclusive language and open-ended prompts. For example, audiologists could suggest that the patient tells their story in whatever manner feels natural. When concluding appointments, an example question such as ‘Is there anything that you would like to discuss that we have not already spoken about during today’s appointment?’ allows space for patients to voice any remaining concerns. Such approaches allow adults to fully describe their listening difficulties and communicate the important aspects of their listening difficulties to their audiologist.

Adults in the present study reported wanting their audiologist to understand their lived experienced of listening difficulties. They may judge the success of their communication about their lived experience based on their perception of their audiologist’s understanding. Adults’ perceptions about their audiologist’s understanding may be based on the audiologist’s response to their self-reports. Ekberg, Grenness, and Hickson (2014) explored how audiologists responded when emotional concerns were raised and found that audiologists typically focussed on providing technical information, rather than addressing these concerns. Grenness et al. (2015b) found that audiologists often missed opportunities to attend to psychosocial concerns which affected relationship building. Whilst adults may perceive that audiologists sometimes do not understand their lived experience, audiologists recognise the importance of understanding patient needs for achieving optimal hearing aid outcomes (Laplante-Lévesque et al. 2013). It may be that audiologists and patients have different experiences of appointments. Improving audiologists’ understanding of the patient’s lived experience, and improving the patient’s perceptions about their audiologist’s understanding, can promote trust in the therapeutic relationship, leading to improved hearing aid uptake and usage rates (Poost-Foroosh et al. 2011; Preminger et al. 2015). Future research could involve interviewing audiologist-patient dyads to explore whether their views on the success of the communication during the appointment were aligned. Identifying any areas in which the experience of the audiologist and patient were not aligned could provide some direction as to how communication in such dyads could be improved.

Although this study did not aim to explore participant’s information needs, participants repeatedly emphasised the need for more information from their audiologist, particularly regarding hearing aid prescription options and hearing aid management. Furthermore, adults reported that they did not know what questions to ask to build their knowledge, as they were unsure of what they needed to know. A similar point was made by a participant in a separate study who said, ‘But as a new user you don’t really know what it is you should ask’ (Laplante-Lévesque et al. 2013, p. 198). Patients have identified knowledge as an important factor for successful and optimal hearing aid use (Laplante-Lévesque et al. 2013). For patients, having knowledge and understanding about their own hearing and their hearing aids’ capabilities can engender a sense of empowerment (Poost-Foroosh et al. 2011). Even if audiologists feel that they have equipped patients with information and knowledge, the perception from the present participants was that this information was not communicated to them, or it was not communicated successfully. Future research should identify the information needs of patients, for example, the level of detail they require, as well as methods to successfully communicate information to patients.

Agenda mapping for healthcare consultations is the process of identifying patient and clinician talk topics and priorities they would like to address (Gobat et al. 2015). The outcomes of agenda mapping can guide how conversations during healthcare consultations are organised and allow flexibility if the agreed focus of the conversation needs to shift. Agenda mapping may resolve some of the challenges faced by adults in the present study when describing their listening difficulties. These reported challenges are not unique, with similar issues being observed among patients with other health conditions. For example, patients with multiple chronic health conditions reported prioritising describing their symptoms, rather than conveying other details relevant to their wellbeing (Lim et al. 2016). Similarly, in the present study, participants reported telling their audiologist about the specific condition they experienced, such as tinnitus, but often did not describe the broader impacts of these conditions on their quality of life. Withholding such details may limit clinicians’ understanding of how these conditions affect patients’ participation in daily activities and overall wellbeing. Participants reported that they would withhold details they perceived as irrelevant to their clinician, which aligns with previous findings about reasons for patient non-disclosure in healthcare (Lim et al. 2016). Patients value being encouraged to participate and be involved during audiology appointments and appreciate their audiologist understanding their individual listening difficulties (Oosthuizen et al. 2022). Specific clinician behaviours to facilitate patient involvement, such as actively encouraging patient questions, allowing patients to guide the conversation during the appointment and addressing social and emotional aspects, have been associated with favourable health outcomes (Beck, Daughtridge, and Sloane 2002). Incorporating collaborative agenda mapping into clinical processes is another method which may help patients and clinicians to better understand each other’s priorities and foster effective communication.

Strengths and limitations

Participants were asked to think back to their experiences of audiology appointments which introduces potential recall bias into their reflections (Henriksen, Englander, and Nordgaard 2022). Despite this potential recall bias, retrospective interviews gave the participants time to reflect, allowing them to contribute considered responses about what they do and do not successfully communicate to their audiologist during their appointments. Additionally, it was unknown when participants most recently attended an appointment with their audiologist meaning that the participant’s memory of the interaction may have also affected the accuracy of their recollections. In retrospect, this information would have been helpful to collect to better understand participants’ responses during their interview and their journey with aural rehabilitation. To improve the reliability of findings, participants could have been included only if they had recent experience of an audiology appointment. Additional data collection methods, such as appointment observation, could be used to validate the accuracy of participants’ recollections but do not provide the patient’s perspective on the successfulness of communication during appointments. Future research could also seek input from audiologists about their experience of communication during appointments, to understand their perspectives of the information that patients report is being communicated, or not being successfully communicated.

The inclusion of the two weeks with heightened self-awareness was considered valuable in facilitating detailed reflections on listening difficulties, and multiple participants commented that these two weeks made it easier to describe their listening difficulties or felt that they had described their listening difficulties in a different way as a result of the reflection time.

Finally, it is likely that participants who self-select for research have higher motivation, interest or awareness about the topic than the general population. Thus, it is possible that this self-selection bias may impact the generalisability of findings. An example of a study finding that may have been affected by self-selection bias is that participants in this study emphasised their obligation to be honest and communicate details about their experience to allow their audiologist to achieve the best outcomes for them. It is possible these participants, who likely had interest in the topic, had awareness about the topic, or strong opinions about the topic, had reflected more about this than others in the general population would have, or potentially had negative experiences if they had previously not effectively communicated details about their experience to their audiologist.

Conclusion

This paper is the first to explore what adults report they are not communicating, or not communicating successfully to their audiologist. These findings have implications for the training needs of current and future audiologists, highlighting the importance of the provision of supports to improve audiologists’ skills in agenda mapping and effectively managing emotional concerns. These findings also have implications for the development of patient self-report tools and questionnaires. Future work should explore the barriers and facilitators that adults experience in communicating their listening difficulties to their audiologist. Understanding adults’ perspectives about their own communication of their experienced listening difficulties will improve both the quality of audiologist-patient interactions and appointment efficiency.

Acknowledgements

The authors would like to acknowledge the contributions and valuable feedback from the five consumer advisors involved: Sharon Giblett, Marigene (Genie) Larew, Patricia Ritter, Richard Gillespie and Merilyn Burt.

Disclosure statement

No potential conflict of interest was reported by the author(s).