A Qualitative Study of Veterans’ Perspectives on Tinnitus: An Invisible Wound

Abstract

Purpose:

Tinnitus is highly prevalent among U.S. military Veterans, yet referral to, and use of, tinnitus rehabilitation services to improve quality of life and functional status with tinnitus is low. Veterans with tinnitus often have other health issues that overlap or exacerbate the impact of tinnitus, potentially complicating referral and rehabilitative pathways. This qualitative study explores views on the daily impacts of tinnitus and experiences with tinnitus-related health care among Veterans. The goal of this research is to amplify the voices of Veterans regarding their experiences with tinnitus to illuminate the physiological and socioemotional sequelae associated with the condition and to increase clinician awareness of the complex, interdisciplinary rehabilitative needs among Veterans with bothersome tinnitus.

Method:

This qualitative study was part of a larger study about tinnitus and traumatic brain injury (TBI). Veterans were sampled to represent national Department of Veterans Affairs (VA) users with and without comorbid TBI, and who were or were not interested in tinnitus rehabilitation services. Forty Veterans with tinnitus were interviewed (32 men, eight women). Data were analyzed using a modified grounded theory approach.

Results:

Major themes across the Veteran interviews included (a) functional effects of tinnitus on daily life, (b) tinnitus and other health conditions, (c) reactions to the lack of a cure for tinnitus, (d) strategies to improve quality of life and function, and (e) use of VA services for tinnitus.

Conclusions:

Our findings highlight that bothersome tinnitus negatively impacted various aspects of daily functioning, including communication, sleep, concentration, and mood, suggesting a need for audiologists to work closely with mental health services to improve quality of life and functional status for those negatively impacted by the condition. Future work is needed to obtain the viewpoints of clinicians and other health care partners to better understand the barriers and facilitators to providing evidence-based tinnitus treatment in VA and non-VA settings.

Tinnitus is the perception of sound in the ears or head—often referred to as ringing—that does not have a source outside of the body. In rare cases, there is a medical condition underlying tinnitus that can be treated, resulting in resolution of the tinnitus. However, in the vast majority of cases of chronic tinnitus, the sound of the tinnitus itself cannot be changed. When clinical care for tinnitus is not focused on changing the sound of the tinnitus itself, the clinical focus then becomes rehabilitative—identifying the functional impacts of tinnitus and working to restore function and quality of life (Clark et al., 2023).

Chronic tinnitus is a common, but frequently misunderstood, condition that can negatively impact function and quality of life. Tinnitus affects 10%–15% of the adult population (Henry et al., 2020; Hoffman & Reed, 2004). Of this population, approximately 80% do not find it bothersome enough to seek tinnitus-specific clinical services (Adrian & El Refaie, 2000; Jastreboff et al., 1996; Tunkel et al., 2014). For the remaining 20%, however, tinnitus impacts their lives—most broadly with respect to sleep disturbance, impaired concentration, and mental and emotional health. Many people may experience negative emotional reactions related to their tinnitus that impact quality of life and functional status.

The prevalence of tinnitus is especially evident among U.S. military Service members and Veterans, as illuminated in a recent longitudinal epidemiologic study (Henry et al., 2021). In that study, results from 428 participants across two sites (a U.S. Department of Veterans Affairs [VA] site and a U.S. Department of Defense site), including 246 Veterans (M_age = 33.5 years) and 182 Service members (M_age = 34.8 years) revealed chronic tinnitus in 67% of the Veterans and 45% of the Service members. Of those with tinnitus, 59% of the Veterans and 44% of the Service members rated their tinnitus as a moderate, big, or very big problem. The effects of tinnitus on this sample were consistent with other research involving non-military/Veteran samples (e.g., Hoffman & Reed, 2004). From the overall sample, the presence of tinnitus had effects on job performance, concentration, anxiety, depression, and sleep. Any of these effects can be either initiated by or exacerbated by tinnitus. In addition, there is emerging evidence that bothersome tinnitus may affect reaction time and short-term memory, which has implications for medical readiness (i.e., assessment of the health and fitness of Service members that helps determine their readiness), in military Service members (Sherlock & Brungart, 2021). In fact, as of fiscal year 2021, tinnitus was the most prevalent service-connected disability among U.S. military Veterans (over 2.5 million Veterans; Veterans Benefits Administration, 2021). These findings, combined with the prevalence of tinnitus in the Veteran population, support the notion that there is at least a portion of this population that is functionally impacted by their tinnitus.

There is also mounting evidence associating tinnitus with anxiety, depression, sleep disorders, early-onset dementia, and other troubling comorbidities related to a decreased quality of life (Alamgir et al., 2016; Bartels et al., 2008; Henry & Manning, 2019; Lin et al., 2013; Loughrey et al., 2018; Theodoroff et al., 2015). Comorbidities common to tinnitus include posttraumatic stress disorder (PTSD; Fagelson, 2007), traumatic brain injury (TBI; Carlson et al., 2019), anxiety and depression (Trevis et al., 2018), early-onset dementia (Loughrey et al., 2018), and suicidal ideation (Han et al., 2018). The etiology of tinnitus in Veterans and Service members is most often associated with occupational exposures to noise, solvents, or acoustic trauma caused by blasts or bombs (Durch et al., 2006; Theodoroff et al., 2015).

The optimal evaluation and management of patients with bothersome tinnitus includes audiologic assessment, otolaryngologic examination, psychological assessment when warranted, and teaching coping strategies to improve quality of life (e.g., Tinnitus Retraining Therapy, cognitive behavioral therapy [CBT]; Fuller et al., 2020). In the United States, relatively few audiologists receive robust training in tinnitus rehabilitative care (Henry, Piskosz, et al., 2019), and there is a dearth of standardized protocols for assessment and provision of rehabilitative services to people whose lives are negatively impacted by tinnitus (Henry & Manning, 2019). There is a body of evidence demonstrating that CBT provided by a behavioral health care provider is an effective way to improve quality of life with tinnitus (Fuller et al., 2020); however, many mental health providers are unaware of this (Zaugg et al., 2020) and interdisciplinary collaboration between audiology, mental health, and other allied disciplines is rare, especially in nonintegrated health systems (Schmidt & Henry, 2018). Compounding this problem, a cure for tinnitus does not yet exist; hence, providing care to improve quality of life with tinnitus is critical and often requires an individualized approach (Hoare et al., 2012). Improving quality of life and function with tinnitus involves directed self-care, meaning that the patient learns and applies skills and strategies to lessen the impact of the condition. Clinicians provide education and support as patients discover which coping strategies work best for their individual situation.

Currently, clinical assessment of the impact of tinnitus relies heavily on self-report questionnaires that assess the severity and the extent of functional and psychological impact. Common questionnaires include the Tinnitus Handicap Inventory (Newman et al., 1996), the Tinnitus Functional Index (Meikle et al., 2012), and the Tinnitus Primary Function Questionnaire (Tyler et al., 2014). Quantitative data from such assessments provide numerical indicators of distress, but they do not provide nuanced information on the experience of tinnitus. Qualitative data provide important contextual information that can augment clinical understanding of a complex condition such as tinnitus. Some research suggests that a multidisciplinary and multidimensional management approach can benefit patients (Cima et al., 2019; Henry, McMillan, & Manning, 2019; Hoare et al., 2012; Theodoroff & Saunders, 2019).

Qualitative research using interviews, narrative approaches, and ethnographic observations can help illuminate people’s perceptions of their health conditions, variation in the experience of chronic conditions, and the lived experience (Miller & Crabtree, 1992). As a population with a high prevalence of tinnitus and other comorbidities, coupled with the shared experience of serving in the military, the purpose of this article is to present qualitative information on the experience of Veterans living with tinnitus.

Method

Overview and Approach

Forty semistructured telephone interviews were conducted with Veterans who were diagnosed with tinnitus, as identified by International Classification of Diseases—Ninth and 10th Revisions—Clinical Modification diagnosis codes assigned in their electronic health record and accessed via the VA Corporate Data Warehouse. These interviews were conducted to learn more about the functional effects of tinnitus on daily life, beliefs regarding tinnitus management, strategies utilized to manage tinnitus, and perspectives on tinnitus and other comorbidities. Participants were sampled from among those who had responded to a 2018 survey about tinnitus experiences and tinnitus-related rehabilitation services (Clark et al., 2023). The sampling frame for the initial survey consisted of Veterans who had used VA health care in fiscal year 2016 and were diagnosed with tinnitus by a VA clinician between fiscal years 2012 and 2016. Veterans were stratified by age, geographic region, and the presence of comorbid TBI and then sampled to ensure sufficient responses from across strata. Interview recruitment occurred from among survey respondents (n = 891) who indicated in the survey that they would be willing to participate in a follow-up telephone interview; we intentionally sampled interview participants for maximum variation (Suri, 2011) according to their sex, geographic region, TBI status, and tinnitus severity. Being interested in accessing tinnitus rehabilitation services was not a criterion for participation in this study.

Participation in interviews was voluntary, and interviews lasted approximately 30 min. Veterans were offered a $20 payment for their participation. All research activities were approved by the VA Portland Health Care System Institutional Review Board, and Veterans provided informed consent prior to participation. Interviews were audio-recorded and transcribed verbatim. Qualitative data were analyzed using a modified grounded theory approach. The reporting of the Method section adheres to the Consolidated Criteria for Reporting Qualitative Studies standards (Tong et al., 2007), which is appropriate for interviews and focus groups.

Research Team and Reflexivity

The research team was led by a VA epidemiologist and health services researcher. Four members of the team conducted phone interviews. All interviewers were conducted by White women with varying occupations: research audiologist, research program manager, and two research associates. Two team members have immediate family members who are Veterans, and the other two team members have worked in audiological research with Veterans for over 20 years. The interview team did not have any prior interactions with the Veterans who participated in the study. Reflexivity (the process of self-reflection and examining ones’ biases; Dowling, 2006) guided the conduct of research, analysis, and interpretation of the data. The concept of reflexivity refers to self-reflection, self-criticism, and acknowledgement that researchers bring their own biases and assumptions to the research process. During data collection, analysis, and interpretation, the research team continually reflected on their own world views and openly discussed them with the other researchers on the team (Reid et al., 2018).

Participant Recruitment and Data Collection Procedures

The research team contacted each potential interviewee and described the present qualitative study. For those Veterans who were interested in participating, telephone interviews were conducted by a pair of study team members using an interview guide. The interview guide is presented in its entirety in the Appendix. The interview team debriefed after each interview using their notes to ground their reflections, and interview transcripts were transcribed by two research associates.

Design and Analysis

An inductive analysis was conducted using a modified grounded theory approach. The modified grounded theory approach included initial and axial coding (Charmaz, 2014), memo writing, and the constant comparative method in which codes, participants, and categories were analyzed to identify consistencies and differences with a main aim toward conceptual refinement (Miles et al., 2018).

Six project team members coded the data in dyads. During the initial coding phase, one member of the dyad reviewed one transcript and generated preliminary codes, and then the second member of the coding team read through the transcript to assess whether she agreed with the coding or emergent codebook. This iterative cycle was completed by the three dyads, and meetings were held to discuss the codes and finalize the codebook. Approximately 13 interviews were coded by each dyad. The team used ATLAS.ti Version 9 as the qualitative software for the analysis (ATLAS.ti, 2021).

After the initial coding phase, the team then shifted to selective coding and focused analysis of the data to identify themes related to the main research questions (e.g., How does tinnitus affect everyday life?), using the method of constant comparison to synthesize the data. With the exception of one outlier (discussed in the Use of VA Services for Tinnitus section), saturation was achieved during this phase; that is, no new information emerged from the data (Miles et al., 2018). All codes and themes, including associated quotations, were discussed by six members of the coding team and two external collaborators who are clinical audiologists with limited expertise in qualitative research. Approximately seven meetings were held with the team of eight team members to ensure harmonization in the interpretation. This article reports the following qualitative findings across Veterans’ interviews: (a) functional effects of tinnitus on daily life, (b) tinnitus and other health conditions, (c) reactions to the lack of a cure for tinnitus, (d) strategies to improve quality of life and function, and (e) use of VA services for tinnitus.

Results

Interviews were conducted with 40 Veterans between the ages of 18 and 34 years (n = 17), 35 and 49 years (n = 12), and 50 years or greater (n = 11). Among them, eight were female and 32 were male.

Functional Effects of Tinnitus on Daily Life

A commonly reported impact of tinnitus on Veterans’ everyday life was related to difficulties with listening and communication (e.g., “it [tinnitus] makes it hard to talk with people if the environment’s noisy at all…” [Participant #1413]) as well as sensitivity to noise. Sleep disturbance was also a commonly reported effect of tinnitus. Veterans talked about loss of sleep, and some mentioned that they wake up in the night and have difficulty falling back to sleep due to tinnitus (e.g., “When I wake up at night all of a sudden, the loudest thing I hear is the tinnitus” [Participant #2456]). Tinnitus also affected concentration. One Veteran described being in a classroom setting, and said that tinnitus affected concentration to the point where it seemed “…pointless to be in the class, it’s like may as well not be here because…I can’t even concentrate to listen [sic] and remember” [Participant #1314]). Veterans also described that tinnitus impacted attention, caused them to lose their train of thought, or caused their mind to drift. Mood was also affected by tinnitus. Veterans described negative emotions related to tinnitus, including feeling annoyed, frustrated, angry, irritable, anxious, embarrassed, and stressed. One Veteran described tinnitus-related mood swings (e.g., “…you can go from good, to bad, in a microsecond” [Participant #2306]). Tinnitus-related noise intolerance (mentioned above) appeared to make some Veterans feel agitated and angry. One Veteran observed that feeling angry made the sensation of tinnitus louder (e.g., “…when I’m angry it seems like the tinnitus is louder. Sometimes it pulsates, the ringing, when I’m very angry” [Participant #1386]).

For some, the daily effects of tinnitus were manageable, including through the use of coping strategies (see section below). For example, one Veteran said, “…when I stay busy [tinnitus is] not that much of a bother…” (Participant #1292). However, for others, the effects of tinnitus severely impacted daily functioning. One Veteran likened tinnitus to other physical injuries stating, “I have an invisible wound nobody can see right now but, trust me, it’s just as debilitating as someone who’s lost their leg or their arm…” (Participant #1414).

Tinnitus and Other Health Conditions

It was common for Veterans to report having multiple co-occurring health concerns in addition to tinnitus, including TBI, PTSD, chronic pain, seizures, migraine, stomach issues, and epilepsy. Tinnitus impacted some of these health issues (e.g., “it’s definitely up there compounding with other things, making other things worse” [Participant #1314]). For example, some participants described tinnitus impacting multiple mental health conditions (e.g., “I think it [tinnitus] affects PTSD and your depression because you are hearing things in your ear, but it won’t go away” [Participant #1711]). One Veteran with TBI mentioned that the beginning of their tinnitus was simultaneous with their head injury: “Well, it was actually directly after I got hit in the head with a piece of shrapnel and as soon as that happened, eventually it was a pretty loud ringing…” [Participant #1491]). One Veteran reported having tinnitus, TBI, and PTSD, and stated that the tinnitus had not yet been addressed: “No, they [VA] really focus on the PTSD and TBI” (Participant #2144). Several Veterans stated that their PTSD impacts their tinnitus and vice versa. In describing the relationship between PTSD and tinnitus, one Veteran said, “…the ringing in my ears is just a constant reminder of where it came from” (Participant #1414).

For some Veterans, tinnitus was considered a top-ranking health issue in their life (e.g., “it’s a high concern” [Participant #2144]), whereas most thought it ranked in the middle (e.g., “I would say not at the top but it’s close up there” [Participant #1786]). One Veteran, who described tinnitus as a serious health issue for him, suggested that the military provide more education regarding tinnitus, concomitant with the education received about other safety risks. He described the need for more education regarding tinnitus, while serving in the military:

…So, if I knew that it’s a serious thing that affects your life 12 years ago or here is something you can be exposed to, 12 years ago, I would have lived my life differently. I would have been more conscious like OK—ear protection, check, loud noises stay away, check. Except I just thought I was invincible. I just thought I’ll be fine. I think education is number one. There is a lack of education about tinnitus. It should be one of those things in the military—oh here is your risk to danger, getting shot at whatever, blowing up. By the way here is something else you should be worried about, tinnitus. (Participant #1011)

Reactions to the Lack of a Cure for Tinnitus

Some Veterans focused on the lack of a cure for tinnitus (e.g., “We still have to find an actual cure about it [tinnitus]” [Participant #1292]). When referencing how they had been told there was no cure for tinnitus, Veterans articulated their disappointment, frustration, or resignation (e.g., “…The VA described the treatments, if you want to call them that, but they again said there’s no cure, there’s no fix” [Participant #1786]). One Veteran recalled feeling surprised upon learning there was no cure: “I was just surprised…that the doctor actually told me there was no cure for it” (Participant #1711). To some, lack of a cure meant that nothing could be done for tinnitus (e.g., “It just is what it is” [Participant #1235]). Others, however, discussed using coping strategies and sound therapy to reduce the impact of tinnitus on their lives, although these approaches did not appear to hold the same weight as a cure.

In addition to being told there is no cure for tinnitus, Veterans were also reportedly told that nothing could be done for it (e.g., “It’s like one of those inoperable brain tumors, that it’s just one of those things that you have and you’re always going to have and there’s nobody–nobody can do anything about it” [Participant #2019]). Veterans were told this both during military service and after serving. The people who told them there was nothing that could be done included others they served with in the military, military medical professionals, VA doctors, non-VA doctors, otolaryngologists, audiologists, therapists, and friends and family members. Veterans also reported finding this information on the Internet. Some Veterans could not recall who told them (e.g., “I’m not really sure. I would assume it was a healthcare provider cause probably some of my family still doesn’t know what tinnitus is” [Participant #1235]).

Many Veterans stated that they would like there to be a solution to the negative effects of tinnitus. One Veteran mentioned, “As far as taking it [tinnitus] away, nothing can take it away but, yeah, I believe something can help me cope with it” (Participant #1807). Other participants seemed frustrated by the belief there was nothing that could be done. For example, one Veteran said, “It’s like a lost cause for me” (Participant #1386). Another Veteran stated, “I know that there’s these things that I’ve tried that help a little bit, but I don’t think there’s anything that can be done” (Participant #1786).

The interviews also revealed an apparent feeling of resignation and acceptance about living with tinnitus (e.g., “It [having tinnitus] means that I will never be able to have normal conversations ever again. It means I get really stressed out if I’m in a noisy place” [Participant #1413]). Some Veterans’ feelings of acceptance and/or resignation of tinnitus were expressed at the same time as they communicated frustration about the VA’s apparent lack of help to address their tinnitus (see below). Others expressed resignation to the belief that nothing could be done about their tinnitus (e.g., “…there’s no actual treatment; I’m not expecting any kind of surgery or anything and I really don’t know how you could get rid of tinnitus” [Participant #1435]).

Strategies to Improve Quality of Life and Function

Many Veterans interviewed had been fitted with hearing aids through the VA, and it was not clear if the hearing aids were originally provided to specifically address tinnitus or to address hearing loss that often co-occurs with tinnitus. A common report was that hearing aids were helpful at minimizing the effects of tinnitus at first but that eventually the tinnitus became noticeable again (e.g., “At first it [using the hearing aids] worked and then now it’s – I can still hear it. Very distracting, very annoying…” [Participant #1910]). For many, hearing aids were helpful (“The hearing aids didn’t take the tinnitus away, but it helped me not to focus on the tinnitus” [Participant #1807]), whereas others had a negative experience (“I don’t know how to explain it but it just seems like it amplified everything else that I didn’t want to hear” [Participant #1991]). Even when hearing aids were reported to be helpful, Veterans were disappointed that using the devices did not completely eradicate their tinnitus.

Veterans were asked if they had experience with the VA Progressive Tinnitus Management (PTM) program or other tinnitus management programs. A small portion of Veterans reported learning coping strategies including breathing exercises and sound therapy, which are elements of PTM. Veterans also reported the advantages of learning about tinnitus management alongside their peers, which takes place in PTM group sessions: “Not only are you learning to cope with it, but you also see other Veterans who deal with the same issue” (Participant #1711). Other Veterans reported they had never heard of the PTM program. One Veteran was not sure if they had heard of it or not, and said, “I kinda just got left with a packet or a bunch of reading material that I’m supposed to try to figure out how to do on my own” (Participant #1435).

Coping strategies were used to improve quality of life and daily functioning within the context of tinnitus. For example, to cope with tinnitus-related sleep disruptions, participants reported using background noise either from a fan, radio, or white noise machine/smart phone app (e.g., “I have to put on a white background noise…soundtrack on my phone when I go to sleep …and that’s how I am able to fall asleep” [Participant #1292]). Others reported learning meditation and mindfulness to manage the impact of tinnitus. While these strategies were useful for some, other Veterans were not interested (e.g., “If there was a fix, I’d probably be interested. If it’s more of the living in the crazy background music, tree-hugging hippy stuff, no” [Participant #2151]).

Additional strategies used by Veterans to reduce the impact of tinnitus included counseling, sleep hygiene, relaxation therapy, and yoga. Sleep medication was also used, although one Veteran noted that tinnitus seemed louder upon waking after taking medication for sleep. Another Veteran reported trying several strategies including a sound generator and homeopathic approaches, such as oils and candles, and concluded that, “ultimately, I just figured out that no matter what I do, it’s [tinnitus is] still gonna’ be there” (Participant #1491).

For some Veterans, the strategies offered by the VA were not satisfying (e.g., “[I’ve] just [tried] the BS ones the VA gave me – the white noise app, meditation and just dumb stuff that never amounted to anything” [Participant #2151]). Some Veterans reported learning about strategies from the Internet. For example, one Veteran mentioned that meditation and using a fan were helpful and that these ideas were “self-directed from what I’ve read on the Internet” (Participant #1103).

Some Veterans had not tried any strategies. One Veteran stated, “I didn’t know if anything was available to be honest” (Participant #1023). Other Veterans reported they were never offered help by health care providers (“Well, I went to the Veterans [Hospital] and they were supposed to check everything out. So, I thought if there was something that could help, they would [have] explain[ed] that to me” [Participant #2406]).

Use of VA Services for Tinnitus

A number of Veterans were optimistic that the VA could help with their tinnitus. Some had previously received VA services for tinnitus, including a hearing exam, hearing aids (including devices that produce sound to help with tinnitus), a sound machine, and/or learning coping strategies. Others had not ever received any services for tinnitus. Several Veterans mentioned that the VA had the potential to help but could not cure their tinnitus. For example, one Veteran said, “I do believe that the VA can treat it, and maybe not cure it, but definitely make it a little bit easier…” (Participant #1414). Several Veterans were aware that the VA offered tinnitus services, but seemed uninterested or disappointed in what was offered. These feelings may be related to their focus on a cure. For example, one Veteran said, “they [VA] told me they have workshops and stuff, but I already know all the information. I mean so unless they come up with a cure someday [chuckles]” (Participant #1786).

Veterans mentioned barriers to receiving care at the VA in general and to receiving tinnitus support specifically. One common problem was a lack of service coordination to connect Veterans with clinical services for tinnitus (e.g., “Nobody’s ever said anything. They just said, ‘you have it [tinnitus],’ and that’s it” [Participant #2585]). Some Veterans felt that that the VA had no adequate treatments for tinnitus (e.g., “There aren’t any like treatment(s) that they have at the VA. The best they could suggest me is to use a white noise machine and I guess, just deal with it” [Participant #1454]). Another said, “There’s nothing they [VA] can do for me, I don’t think. I have got damage. I don’t think it is going to be repairable” (Participant #2306).

One Veteran reported that loud sounds at the VA are bothersome, potentially implying that tinnitus-related sensitivity to noise is exacerbated in these settings: “…going to the VA hospital or the VA clinics, if it’s really noisy, my anxiety just shoots further up because it’s like I can’t focus” (Participant #1472). It is unclear if tinnitus was the cause of this individual’s apparent noise sensitivity; Veterans in this study also often reported having PTSD, which can lead to noise/sound sensitivity. Others reported long travel times, traffic, and other delays in receiving the care they need such as needing to book appointments far in advance (e.g., “I think I’m going to get ignored ‘til the end” [Participant #2019]). Additional barriers included problems with the VA’s follow-up communication and experiences with VA providers minimizing or ignoring the impact that tinnitus has on their lives.

Discussion

In this qualitative study of 40 Veterans living with tinnitus, we found that tinnitus negatively impacted various aspects of daily functioning, including communication, sleep, concentration, and mood, similarly to that of non-military or non-Veteran populations. Some Veterans were deeply bothered by the impact of tinnitus on their lives. Although many were willing to try strategies to improve quality of life with tinnitus, many focused on the lack of a cure for tinnitus, potentially impacting their perspectives on the concept of rehabilitation. Although Veterans had experience with hearing aids, sound therapy, and other coping strategies, overall, they seemed disappointed and frustrated that tinnitus was “still there.” Veterans’ views on whether something could be done to help with tinnitus impacted their perspectives on VA health care. Many Veterans’ experiences with providers were unsatisfying as they often were told there was no cure and/or that nothing could be done to help. While it is true that there is no cure for tinnitus, several strategies can be utilized to improve quality of life with tinnitus, although it is not clear that those options were always offered to, or discussed with, Veterans by their providers. Several barriers to accessing care for tinnitus at the VA were also revealed, many of which may be specific to Veterans with tinnitus and other comorbid conditions.

Functional Effects of Tinnitus in Daily Life

In this study, Veterans reported a range of difficulties that they attributed to their tinnitus, including problems with communication, sleep, concentration, and mood. For some, tinnitus was deeply troublesome, impacted quality of life, and caused feelings of frustration and anger. Previous qualitative research in non-Veteran populations has identified similar functional impacts (Andersson & Edvinsson, 2008; Colagrosso et al., 2019; Dauman et al., 2017; Watts et al., 2018). Tinnitus is often comorbid with hearing loss, depression, anxiety, and PTSD, which also can cause problems with communication, sleep, concentration, and mood. The overlap in symptoms makes it difficult to determine if comorbid conditions are partially, or even completely, driving problems attributed to tinnitus.

Audiologists are accustomed to encountering patients who erroneously attribute their hearing problems (often described as communication problems) to their tinnitus (Henry et al., 2015; Ratnayake et al., 2009; Scheffer et al., 2021). The Tinnitus and Hearing Survey was developed specifically to help audiologists differentiate hearing problems from tinnitus problems irrespective of how the patient labels the problem (Henry et al., 2015). Audiologists are accustomed to providing treatment for hearing loss for communication problems attributed to tinnitus. However, other health care providers may not realize that a referral to audiology for a hearing test is appropriate for a patient reporting that tinnitus makes it hard to understand what other people are saying. Audiologists are encouraged to inform primary care providers and behavioral health providers that a referral to audiology for any patient complaining of trouble understanding what others are saying (for any reason) is appropriate and helpful.

When patients report to audiologists that tinnitus is impacting sleep, concentration, and mood, it is reasonable for an audiologist see if teaching coping strategies for tinnitus will help with those problems. If using coping strategies for tinnitus does not resolve problems with sleep, anxiety, and mood to the patient’s satisfaction, it is then especially important to ensure that appropriate referrals are offered to primary care and/or behavioral health to ensure that comorbid conditions such as insomnia, anxiety, depression, and/or PTSD are identified and that appropriate treatments are offered.

Tinnitus and Other Health Conditions

Some Veterans identified that their tinnitus affects other health conditions, including TBI, PTSD, depression, migraines, and chronic pain. Our study also found that Veterans perceived a bidirectional relationship between bothersome tinnitus and mental, emotional, or psychological distress. The literature has documented that the symptoms of TBI and tinnitus can overlap, including cognitive difficulties such as problems with concentration, as well as noise sensitivity (Callahan et al., 2018). Studies have also identified that Veterans with a PTSD diagnosis have more severe tinnitus and more noise tolerance problems compared to Veterans with tinnitus only (Fagelson, 2007). Imaging studies have shown that tinnitus and PTSD may share central nervous system mechanisms and that one can exacerbate the other, when present together, including by producing emotional responses to sound (e.g., the tinnitus itself; Bogdanova & Verfaellie, 2012). However, by the same token, treating the effects of one condition may lead to improvements in the other. A pilot study published in 2022 demonstrated that Veterans with tinnitus and PTSD who were treated only for PTSD demonstrated measurable reductions in distress from tinnitus and symptoms of depression after treatment (Moring et al., 2022).

The literature also shows reductions in symptoms of anxiety and depression when care for tinnitus-only is provided (Henry, Thielman, et al., 2019). Future research may be warranted to explore this effect of treating one condition leading to improvement in other conditions among patients with PTSD, depression, anxiety, insomnia, and other conditions. These findings have important clinical implications as they reinforce the importance of primary care providers, mental health providers, and audiologists collaborating in the provision of rehabilitation services for Veterans with bothersome tinnitus.

Many Veterans in this study said that their prioritization of tinnitus, or how their concern about tinnitus ranks in relation to their concern about other health issues, fluctuates over time and in relation to the symptoms of their other conditions. This finding highlights the importance of a team-based approach to tinnitus management in which providers collaborate with each other and with the patient to develop care plans. In addition, our findings underscore the need for referral relationships between a variety of medical providers and health professionals with expertise in tinnitus, as well as referral mechanisms for nontinnitus issues that are common among tinnitus patients (Beck et al., 2019).

Reactions to the Lack of a Cure for Tinnitus

This study revealed that Veterans had mixed feelings about whether or not something could be done about their tinnitus. Many Veterans were focused on a cure or completely eliminating their tinnitus. Other qualitative studies have identified a preoccupation with a cure for tinnitus by both patients and providers (Marks et al., 2019). Learning that there is no cure for tinnitus was shocking, disappointing, and frustrating for many Veterans in this study. From a clinical standpoint, this finding highlights the need for clinicians to be prepared to navigate emotional responses to this information. In this study, many Veterans who were focused on a cure also perceived the available strategies (such as using a noise machine) as hopeless or inadequate. Even so, clinicians can probe for things like sleep problems, mood problems, and hearing problems and find out if the Veteran would like help with those.

Studies have shown that optimism (defined as the expectation that future events will have a positive outcome) is associated with better well-being (Morone et al., 2021), increased resilience to stress (Tindle et al., 2012), and potentially better treatment outcomes (Vollmann et al., 2014). This relationship has been studied in a range of health conditions such as chronic pain, coronary heart disease, cancer, and mental health disorders (Morone et al., 2021; Tindle et al., 2012). Studies have also identified that there may be a relationship between optimism and a patient’s experience of tinnitus distress (Andersson, 1996; Handscomb et al., 2017; Pryce & Chilvers, 2018; Vollmann et al., 2014), although to our knowledge, the effect of optimism on tinnitus treatment response has not yet been investigated. While ensuring realistic expectations is important, given this evidence, it may also be appropriate for providers to explicitly foster and enhance tinnitus patients’ sense of optimism about the possibility of improving quality of life with tinnitus even if the perception of tinnitus never dissipates. Providers can help foster this optimism by discussing strategies that have been helpful to others for reducing the emotional and functional impact of tinnitus (Henry et al., 2017; Husain et al., 2018; Landry et al., 2020). Similarly, testimonials from patients with tinnitus could offer encouraging insights to their peers with tinnitus (Clark et al., 2021).

Strategies to Improve Quality of Life and Function

Hearing aids were the primary strategy Veterans reported for addressing the impact of tinnitus. However, hearing aids (including those with a built-in sound generator) often did not meet Veterans’ expectations. There was disappointment and frustration when some Veterans learned, after trying hearing aids, that their tinnitus was not eradicated. The fitting of hearing aids (with or without a sound generator) is part of the standard clinical protocol for tinnitus recommended by Henry and Manning (2019), along with a comprehensive audiological assessment, validated tinnitus questionnaires, tinnitus counseling, and follow-up care. Unfortunately, this protocol has not reached widespread adoption. For some individuals with bothersome tinnitus, a hearing-aid fitting alone will be insufficient without addressing comorbid conditions and psychosocial impacts and providing realistic expectations of the effect of rehabilitation options.

Past studies have identified common factors potentially modulating tinnitus-related problems, including noise and other environmental factors, and individual factors including attentional focus, stress level, and frustration (Colagrosso et al., 2019; Dauman et al., 2017). Gathering contextual information, such as during a detailed case history, can help create a more complete picture of how tinnitus impacts daily life, and support the development of an individualized plan for rehabilitation that is aligned with the patient’s goals (Clark et al., 2021).

Use of VA Services for Tinnitus

Veterans in this study identified a few barriers to receiving VA services for tinnitus, including long travel times to a clinic and symptom-triggering noise in busy hospitals and clinics. Telehealth may help address some of these and other barriers. This study was conducted before the COVID-19 pandemic when access to telehealth services was not yet widespread. Due in part to the pandemic, telehealth utilization (across health fields) has dramatically increased over recent years to ensure health care access and continuity of care while upholding patient and provider safety. Institutional support for telehealth may continue even after pandemic-era strategies to support telehealth have lifted. Furthermore, patients and providers may be more comfortable using telehealth for tinnitus rehabilitation after having experience with remote service delivery in other areas of health care.

The current study also revealed that there is a lack of awareness of how VA can help with tinnitus. Veterans knew about the lack of a cure for tinnitus but appeared unaware (or unconvinced) about the efficacy of strategies to improve quality of life with tinnitus. Studies have identified that despite research illustrating that PTM can help reduce the impact of tinnitus, there are barriers to its implementation (Schmidt et al., 2017; Tuepker et al., 2018; Zaugg et al., 2020). One area of need is greater engagement of mental health providers (Schmidt et al., 2017). This suggestion is particularly relevant for Veterans like those in the current study who have co-occurring mental health issues such as PTSD.

In this study, many Veterans felt that their tinnitus was not taken seriously by health care providers. This finding is supported by other studies conducted in non-Veteran populations (Beukes et al., 2021; Dauman et al., 2017). Validating lived experiences has been described as a crucial mechanism in coping with “invisible” health conditions (Munir & Pryce, 2021). Given the range of impacts tinnitus can have, from sleep dysfunction to anger, it would be appropriate for providers—regardless of their specialty—to learn to identify common ways tinnitus impacts quality of life and function, to validate patients’ experiences, and to reference recommended clinical practice guidelines for tinnitus rehabilitation (Tunkel et al., 2014). Collaboration across specialties is crucial to ensure patients receive timely diagnosis and rehabilitative services. Communicating about tinnitus diagnosis and rehabilitation goals across a patient’s health care team is recommended, particularly given that there is likely a bidirectional relationship between health conditions, such as PTSD and chronic pain, and that management strategies across the conditions may be similar.

Strengths and Limitations

The primary strength of this study is that it provides insight into Veterans’ lived experiences with bothersome tinnitus and other comorbidities within the context of their daily lives, their attitudes concerning their tinnitus, and how the health care system and providers at VA have managed their concerns. This qualitative research provides important contextual information that is “hidden” in standard survey-based studies, namely, Veterans’ experiences with bothersome tinnitus. As the VA is committed to providing Veteran-centric care, these stories of the impacts of tinnitus, told by Veterans living with the condition, can help facilitate continued improvements in the care processes. In addition, as a learning health care system, empirically representing the voice of Veterans has the potential to empower VA providers to overcome barriers and make tinnitus services more accessible. Another key strength of this work is that our survey sampling strategy included a nationally representative sample of Veterans who were previously diagnosed with tinnitus, leading to a diverse group of survey respondents in terms of age, sex, geographic residence, and tinnitus severity. Interested interview participants were stratified by TBI diagnosis status, and, from both strata, we purposively sampled men and women, a range of ages, geographic locations, and tinnitus severity levels.

This study also had limitations. Like most research on health disorders, the individuals who chose to volunteer for the study may have had stronger opinions about tinnitus compared to those who did not volunteer, and therefore the results may not be reflective of Veterans in general. In qualitative research, a key principle is that the beliefs and preconceptions of one individual do not influence what is reported. We addressed the potential of research bias through triangulation in the data collection and analysis process. We had four researchers from different backgrounds conduct the interviews and six to eight researchers analyze the data. This ensured that the perspectives of those we interviewed, rather than our own views, informed the interpretation of results and our presentation of findings.

Conclusions and Implications

This study suggests that tinnitus contributes to a breadth of issues in Veterans’ daily lives, ranging from minor disturbances to being deeply bothersome. Although some of the Veterans interviewed recalled using coping mechanisms, some also stated they were told that nothing could be done to help their tinnitus. Given that tinnitus can be associated with multiple health areas, such as sleep, mood, and mental health, the promotion and coordination of tinnitus rehabilitation options across a wide breadth of health care domains is warranted. As outlined by other research and white papers on the need for multidisciplinary care for individuals with bothersome tinnitus (Cima et al., 2019; Henry, McMillan, & Manning, 2019), this project provides further evidence that the functional impacts of tinnitus on quality of life and attendant comorbidities require individualized referral pathways, and increased awareness among providers. When a clinician is faced with a patient with tinnitus, it is true that usually nothing can be done to make the tinnitus go away. However, when providing services to patients with complaints of tinnitus, as well as sleep, mood, or hearing, the provider should be aware that amelioration of insomnia, depression, anxiety, or communication difficulties may decrease the perceived intrusiveness of tinnitus. Leaving a health care provider’s office with the impression that “nothing can be done” is very different than having a health care provider who expresses familiarity with the functional impact of tinnitus; offers help with concerns like sleep, mood, and so forth; and points out that addressing these issues can improve their quality of life. Future work is needed to obtain the viewpoints of clinicians and other stakeholders to better understand the barriers and facilitators to providing evidence-based tinnitus treatment in VA and non-VA settings.

Appendix

A Qualitative Study of Veterans’ Perspectives on Tinnitus, an Invisible Wound

Veteran Interview Guide

[Note: As is customary in qualitative, semi-structured interviewing practices, the exact wording of questions and probes may vary. The questions and probes listed here are representative of the general content to be explored in the interview. Not every question may be asked of every participant depending on interview flow and timing.]

Introduction:

Hello and thank you for taking part in this interview. My name is [Interviewer] and assisting me is [Note-taker]. As you know, we are with the Portland VA and are working on a research project about tinnitus. We wanted to talk with you by phone because you have first-hand perspectives on things we are trying to learn about. We are interested in hearing about your experiences with tinnitus and about services in the VA that you have found useful, or would find useful, to help with your tinnitus. Our goal is to find better ways to help Veterans who are bothered by tinnitus.

First, it is important that you know that there are no right or wrong answers—just different points of view. Please feel free to share your point of view with us, no matter what it is. Second, we are going to record this session just because we can’t write quickly enough to catch all of your comments. We want you to feel comfortable sharing your honest opinions and we want you to know that your name will not be included in any reports. Do you have any questions about this interview, or about our research?

In a moment I will start the recorder and ask for your permission to participate in this research and to be audio recorded. This recording will be stored on a secure server behind the VA’s electronic firewall.

Informed Consent

• Ok, the recorder is on: Please state your name. (_____) This is _____from the VA Portland Health Care System in Research. In regard to the tinnitus study that I just covered, Mr./Mrs./Ms._____, do you understand the purpose of the study, your rights as I explained them to you, and voluntarily consent to participate in the study?

• Do you agree to be audio recorded?

Thank you for taking the time to join us for this interview – If you’re ready, let’s get started!

Questions:

My 1^st questions are about your history and experiences with tinnitus:

[Note to interviewer: Try to ensure interviewee is describing their tinnitus and not confounding with their hearing issues.]

• How long ago did you first notice tinnitus? (Probe: Did your tinnitus start while you were in the military?)

  • [If during military service:] How did this affect your job performance or operational readiness? (Probe: sleep? Ability to concentrate? Stress? Mood? Ability to hear? Ability to relate/communicate with co-workers?)
  • [If during military service:] Did you communicate with a health care provider about your tinnitus at that time? Why or why not? (Probe: Were you concerned about how it might affect the appearance of your ‘readiness’?)
• How does your tinnitus rank in terms of your overall health concerns: Is it something you bring up with your doctor?

  • Why or why not? (Probe: Do you believe the VA can help you with this problem? Does it bother you enough to want help?)
• Have you ever been told that nothing can be done about your tinnitus?

  • [If yes:] Who told you that? (Probe: Health care provider? Friend/family member? Information found on the Internet?)

    • What do you believe [the source] meant when they said this? (Probe: Your tinnitus might not change, and you would never feel any better? Your tinnitus might not change, but you could still find ways to feel better? [The source] might be wrong, and you would keep searching for ways to change your tinnitus?)
  • [If yes or no:] Do you believe anything can be done to help you with your tinnitus?

    • Why or why not? (Probe: Because you’ve seen ads on TV? Information on the Internet?)

My next questions are about treatments or services for tinnitus:

• Have you ever tried any treatments for your tinnitus? (Probe: What about health care services?)

  • [If yes:] What treatments/services have you tried? (Probe: Supplements? Ear drops? Classes/groups?)

    • Have these been helpful for you?
    • [If classes/groups:] Where were these received?
  • [If no:] Why not? (Probe: Nothing was offered? Not a priority? Too expensive? Didn’t think it would help?)

• How would you like to receive tinnitus services? For example, in-person in a clinic, by telephone with your clinician(s), or in another way (e.g., self-help books, V-tel)? (Probe: Rank their preferences, if possible)

Appendix

A Qualitative Study of Veterans’ Perspectives on Tinnitus, an Invisible Wound

My final questions are about a specific type of tinnitus program called “Progressive Tinnitus Management,” or “PTM,” which is sometimes offered to people with bothersome tinnitus. You read a little bit about this program in the survey you took for us. I will read the description of Progressive Tinnitus Management and then we will discuss what this might look like for you:

• Have you ever heard of Progressive Tinnitus Management/PTM? If so, how?

• What do you think about learning “coping skills” to improve your quality of life with tinnitus?

  • Does the term “coping skills” affect your opinion about PTM? Why or why not? (Probe: How best could we describe this part of the program?)

• Would this be a type of service you could picture yourself receiving? Why or why not? (Probe – Too much homework? Too many visits to VA? Not confident it will help you? Co-pay too expensive for that many visits?)

• If not, what would help change your mind? (Probe – Communication with clinician? Hearing from someone with tinnitus that PTM helped them? Recognizing some of the skills as helpful from other contexts (e.g., mental health treatment)? Informational materials? Run out of other options? Belief that PTM could help you? Less expensive to attend?)

• [If they endorsed, above, having been told “nothing can be done”:] Would you have been open to learning about this program when your health care provider told you there was no “cure” for tinnitus? Why or why not?

• If this program were offered to you, would you prefer to participate in the education/skill-building sessions one-on-one with a clinician, or in a group setting, with other Veterans like you? Why?

• What are the biggest things that would help you decide to participate in Progressive Tinnitus Management if your health care provider offered it? (Probe – Understanding the step-by-step process? Receiving written materials/workbook? Not having to travel to VA to get this service? Hearing from other Veterans like you that PTM helped them? Reduced cost?)

• What are the biggest things that would prevent you from participating in Progressive Tinnitus Management? (Probe – Not enough time? Don’t like working with psychologists/being associated with mental health? Don’t live close enough to the VA? Co-pay too expensive?)

  • If the program were offered by telephone, would you prefer to participate in-person or by phone? Why?

Well, we would love to hear more about your experiences and opinions, but we don’t want to go over our scheduled time with you. Before we hang up, is there anything else you’d like to add that you might not have had a chance to say?

Thank you very much for taking the time to participate in this interview.

Data Availability Statement

The data sets generated and/or analyzed during the current study are available from the corresponding author on reasonable request.