“I can see a path forward now”: a qualitative investigation of online groups for tinnitus in the time of Covid-19

Abstract

Objectives

The Covid-19 pandemic led the British Tinnitus Association to offer more online support to people with tinnitus. The aim of this study was to understand how low-intensity group-based digital interventions could benefit people with tinnitus.

Design

Semi-structured interviews explored participants’ experiences and views on receiving support via an online group.

Study sample

Sixteen people with tinnitus who had attended a recent online tinnitus group and/or workshop were recruited using convenience sampling

Results

Three overarching themes were extrapolated from the data: feeling part of a community, being reliably informed, and living better with tinnitus.

Conclusions

Participants reported significant benefits from both types of online group. There was appreciation for the accessibility of help during lockdown, and participants felt that this type of support would continue to be valuable post-pandemic. As seen in research on face-to-face groups, benefits came from a supportive community of people with tinnitus and knowledgeable, skilled and trustworthy facilitation and information provision. Outcomes focussed on feeling less isolated, more informed and hopeful. Online groups could offer an accessible ongoing resource supporting people on their journey with tinnitus.

Keywords:

• Tinnitus
• digital
• support groups
• online
• information groups
• patient education

Introduction

Tinnitus is a long-term condition with no cure that can “eliminate” the sound of tinnitus (McFerran et al. 2019), although people can learn to adapt to it (McKenna et al. 2014). Systematic reviews show that cognitive behavioural therapy (CBT) effectively reduces tinnitus-related distress (Fuller et al. 2020; Zenner et al. 2017), but it is not widely available to people with tinnitus in the UK and few psychologists specialise in tinnitus (McKenna et al. 2020). Tinnitus therapy usually falls to audiologists and hearing therapists, who are rarely trained in CBT. A survey of NHS Audiology departments in England (Hoare et al. 2012) found that approaches vary, but most departments offer some combination of audiological management and tinnitus education. A qualitative study by Pryce et al. (2018) found that clear, trustworthy information was highly valued by patients attending tinnitus clinics. Tinnitus Information Sessions, in which a clinician talks to patients in a group in lieu of a first appointment, have become popular in the UK (Hoare et al. 2015). Although these have not been empirically investigated, a review of five national clinical guidelines on tinnitus found that giving patients information about tinnitus was seen as essential in all of them (Fuller et al. 2017). The National Institute for Health and Care Excellence (NICE) guidelines on tinnitus have since been published in the UK, and recommend that information about tinnitus is given at all stages of care (NICE 2020). These guidelines recommend directing patients towards self-management strategies and support groups.

The effectiveness of tinnitus information or education has not often been evaluated separately from other types of intervention (such as CBT), although education often forms a key part of intervention (Cima et al. 2012; Jastreboff and Hazell 2004). An exception is tinnitus education offered as a component of the Progressive Tinnitus Management programme by the Veterans’ Association in the USA. Participants attend five workshops focussing on understanding tinnitus and management strategies. These sessions are highly rated by participants and in an evaluation of the programme, 77% of attendees felt better able to cope with their tinnitus afterwards (Henry et al. 2017) and most continued to use the coping skills taught five years later. (Edmonds et al. 2017).

“Social cure” theory indicates the therapeutic benefits of identification with a group, which goes beyond education (Wakefield et al. 2019); stronger identification between the individual and the group is associated with enhanced wellbeing (Sani et al, 2012). The “invisible” nature of tinnitus may make this particularly important, as others find it hard to understand, making it challenging to describe and leading to feelings of separation (Pryce and Shaw 2019). Qualitative research demonstrates that shared understanding within tinnitus groups is an essential part of therapeutic benefit, linked to gaining knowledge, feeling less isolated, more understood and getting social support whether in a tinnitus support group (Pryce et al. 2019) or higher intensity therapy group (e.g. Marks et al. 2020). Research with 986 members of the Deutsche Tinnitus Liga (DTL; Kofahl 2018) also demonstrated that the highest-rated benefits of group attendance were learning from others with tinnitus and not feeling alone. Attendees rated themselves as better informed and better able to cope than non-attendees.

At the start of the pandemic, most tinnitus support groups stopped meeting in person and numerous hospital-based Tinnitus Information Sessions and individual appointments were cancelled or postponed. However, many people reported worsening tinnitus during lockdown or had their first experience of tinnitus following Covid-19 (Beukes et al. 2020). The British Tinnitus Association (BTA) responded to this pressing need by developing new ways of remotely delivering trustworthy, helpful tinnitus support and information.

There were already several online tinnitus forums via which people communicated asynchronously. Thematic analysis of text on four publicly available forums was carried out by Ainscough et al. (2018). They found a largely supportive community, with people frequently sharing information and offering comfort and supportive words to those expressing emotional distress. However, the authors noted that response time to questions could be very slow, sarcastic comments were fairly common and misleading information was easily spread. Since asynchronous forums may not give people the quality of information, connection and support they are looking for, online educational workshops and support groups offered a preferable alternative, so were developed by the BTA in April 2020.

To date there has been no investigation of online support groups for tinnitus. A systematic review by Banbury et al. (2018) considered seventeen qualitative, quantitative and mixed-methods studies involving groups run via videoconferencing for people with other long-term health conditions. To be included, groups had to be facilitated by a health professional, involve education and allow participants to speak to each other. Satisfaction was high overall, with participants feeling they became better informed and appreciating a sense of social cohesion. Adherence was generally very good and accessibility for those inexperienced with videoconferencing was good, if IT support was available. However, as tinnitus is a specific condition with a high prevalence, it is important to investigate how appropriate this type of approach is for tinnitus patients.

This novel study aimed to investigate people’s experiences of support groups and educational workshops for tinnitus delivered online via videoconferencing. We wanted to explore whether people with tinnitus were able to benefit from social support even when not in a room together, whether there were specific advantages to meeting online and whether experiences of online support groups and educational workshops were markedly different from each other. Findings would help to inform tinnitus specialists whether it is worthwhile expanding and further investigating this low-cost intervention in future. A reflexive Thematic Analysis approach (Braun and Clarke 2006), following a realist/essentialist epistemological position was taken. This was suited to the research question relating to how people experienced online tinnitus groups. It allowed us to identify patterns across a data set and conduct inductive investigation into people’s impressions of online group support.

Methods

Design

This cross-sectional qualitative study engaged a convenience sample of participants recruited from online workshops and support groups during the pandemic. Any individual taking part was eligible to complete the research. Semi-structured interviews were conducted carried out, asking participants about their experiences of participating in an online group.

Interventions

Online workshops were delivered by the second author, a tinnitus researcher and therapist experienced in running educational workshops in person. Workshops consisted of two, two-hour sessions delivered one or two weeks apart. All were fully booked (12 participants) with 3-5 participants attending only the first session. See Supplemental Table 1 for a summary of content.

Table 1. Description of participants.

Participant	Group attended	Gender	Age range
1	SG	M	25–34
2	SG	M	55–65
3	SG	F	Unknown
4	SG	F	45–54
5	SG	M	Unknown
6	SG	M	Unknown
7	SG	F	45–54
8	SG (interview 1)	M	55–64
8	WS (interview 2)	M	55–64
9	WS	F	45–54
10	WS	M	Unknown
11	WS	F	55–64
12	WS	F	25–34
13	WS	F	Unknown
14	WS	F	55–64
15	WS	F	25–34
16	SG & WS (one interview)	M	65–74

Note: Participant 8 took part in two groups and gave two interviews. Participant 16 took part in two groups and gave one interview where he discussed both.

Online support groups were facilitated by different experienced BTA volunteers. Support groups consisted of a 1.5 hour session occurring monthly. People attend as often as they like. Places are unlimited but about 15 people usually join. The meeting content varies, but there is usually either an invited speaker or a specific discussion topic.

Both groups used Zoom, and a member of BTA staff managed technical issues. Both were advertised and booked via the BTA. There was a small charge of £5 for each workshop; support groups were free.

Recruitment and sampling

During sessions, people were invited to email the BTA if they were interested in being interviewed for this study. Volunteers were emailed a participant information sheet and online consent form. We aimed to recruit a roughly equal number of workshop and support group participants. Due to the short-term nature of the study and the limited number of groups, only a small number of participants volunteered, and as such we used a convenience sample, whereby all who volunteered were included in the study. All participants provide full, informed consent.

Interview process

A semi-structured interview schedule was devised based on clinical experience and discussion amongst the research team (researchers, Hearing Therapist, Clinical Psychologist) and group facilitators. The interview asked participants about how they found the group, what it was like having support available online, how groups felt when online, how they found the content and whether they noticed any effects on tinnitus and their wellbeing during and after attendance.

All interviews were conducted over Zoom, allowing for Covid-compliance. Interviews were audio-recorded by the interviewer, fully transcribed by one of the research team and recordings then destroyed.

Participants

There were 17 interviews conducted with 16 individuals (one did two interviews about different groups). Interviews were conducted by the first author (a clinical psychologist with extensive tinnitus experience) or by a master’s student with experience in clinical interviewing, supervised by the first author. Seven had completed the support group (SG), seven the educational workshop (WS) and two had done both (one gave a single interview, one gave two interviews, five months apart). Of those disclosing age and ethnicity, most were over 45 and all identified as White or White British. Across both groups 50% were male, although there were more female interviewees for the workshop (see Table 1). Tinnitus duration was not formally recorded, but varied widely (from a few months to many years).

Analysis

Thematic analysis was conducted based on a realist/essentialist approach, whereby the responses of each participant was assumed to indicate their experienced reality (Braun and Clarke 2006). The approach acknowledges the subjective role of the researchers, who in this case were experienced in tinnitus, and one had delivered some of the groups. Analysis focussed on the semantic level by looking for explicit meanings and followed the guidelines of Braun and Clarke (2006, 2019). The analysis was inductive, driven by the data rather than theory. At first the data for the support group was read as a whole to form an overall understanding, with initial codes created by the final author. These were discussed in meetings with the broader research team at which the codes were refined and initial subthemes created in a collaborative way. The same process was repeated for the workshop interviews. Following this, an additional meeting led to the clarification of subthemes which were grouped into overarching themes and an initial thematic map. This map was reviewed and refined by the team members individually. The group met three further times to discuss preferred refinements and agree final changes. The group discussions included reflection on how researchers experienced in tinnitus would bring to bear interpretations linked to their clinical understanding. This was different for the final author who was naive to tinnitus, and discussion on different opinions enabled the group to consider alternative perspectives. Disagreements were managed through discussion and final consensus.

The codes and themes for both groups were very similar; most sub-themes and the over-arching themes were clearly present in both. The research group agreed that this high degree of similarity indicated a need to analyse all interviews as a complete dataset, and they are reported as such.

Results

There were three overarching themes across both the workshops and support groups: (1) Feeling part of a community, (2) Being reliably informed, and (3) Living better with tinnitus. It was important to recognise that these groups were conducted within the context of Covid-19. We revisit this at the end of the analysis.

Overarching theme 1: feeling part of a community

Participants valued connection with and support from like-minded people and experts, indicating that even online, groups can offer this vital therapeutic element as seen in face-to-face groups (Pryce et al. 2019).

“It just, it was basically that you’re not, you know, on your own. People experience exactly the same things”. (P14-WS)

Social network

Participants enjoyed listening and talking to others online, rather than learning about tinnitus information alone. This supports findings from other group-based therapies for tinnitus where developing a community with others is key (Marks et al. 2020; Pryce et al. 2019)

“I think it’s nice to talk to a group of people which understand what you’re talking about… Because if you’ve never experienced tinnitus, you will not have a clue”. (P4-SG)

Communicating with others was particularly appreciated after the social isolation of Covid-19.

“I felt surprisingly positive when I turned off the machine after each meeting… lockdown had a lot to do with it. We’d been constrained in an unnatural way for the last few weeks and we could then actually talk to other people about things. It didn’t matter that it was tinnitus, it could have been anything”. (P9-SG).

By openly talking about tinnitus, participants felt that everyone was “in it together” (P11-WS). From the perspective of the support group this element was “probably the best thing” (P1-SG) overall, along with knowing that “I can reach out if I need anything” (P5-SG). Some of those with previous experience of face-to-face support groups found the online version an improvement.

“The others in the group make you feel like a person… they know our names, they remember what we said before and… it’s more personal and more connected than actually the group events physically”. (P5-SG)

Workshop participants valued the social support, with additional emphasis on working together, learning about specific interventions and putting these into practice.

“… by the end of it, we were all holding books… it was a bit motivational”. (P11-WS)

There was a strong appetite to continue this social network in the longer-term, especially for workshop participants who were limited to two sessions. Suggestions included having follow up sessions, developing an ongoing group on social media or joining a support group.

“… we sort of interacted quite well between us, is there any way that we could carry on, afterwards?… where we could still offer support to people saying ‘how are you today’ sort of thing… ‘have you found out anything else’”. (P14-WS)

Accessibility

Participants celebrated the accessibility of an online format. Nationwide accessibility was a factor participants felt should be continued after the pandemic, especially for those less able to travel (due work, caring, health, mobility, location etc).

“… very easy… more comfortable in the fact that I don't need to drive anywhere. I don't need travel arrangements. And I can be in the comfort of my own office or at home. So in some aspects I enjoy the online more”. (P8-SG)

There was an appreciation for the age diversity of people in the groups, which helped with engagement (sometimes an issue with groups where timing or location may impede accessibility to people from different life-stages).

“It was good to see… people my age as well. Obviously, previous therapy sessions I've attended, it was definitely a much older demographic that were there, and I felt very isolated by it”. (P15-WS, aged 33)

The size of the group was pertinent to an online format where conversation can be more stilted. Managing this using breakout rooms was appreciated, enabling people to “bounce off” one another (P3-SG), but smaller groups were preferred, particularly for the more conversational support groups.

Emotional connection

Participants were impacted by the emotional experiences of their peers which had both pros and cons. Seeing other people in the group shift emotionally could be moving and motivating, creating hope for themselves and shared enjoyment with another’s success.

“… it’s made me realise that I’m a lot better off than lots of people and perhaps a bit worse off than others. In a way, that makes you feel strangely better”. (P12-WS)

This could be a “double edged sword” (P8-SG) as seeing others do better than oneself sometimes led to jealousy or inadequacy whilst seeing other people struggle could instigate fear.

“… it’s really powerful when you hear the positive ones… it really helped to support me and know that actually everyone is going through this process… I think I struggled with [knowing]… that some people are struggling with it, but I feel like some people can tend to project that negativity into the group and be quite predominant in saying it”. (P3-SG)

Facilitators should therefore enable people to speak honestly about their experiences in a supportive environment whilst simultaneously helping individuals to differentiate their unique experience of tinnitus from that of other people. The emotional connection between participants was an important dynamic influencing the therapeutic experiences, in line with previous findings.

“There was a chap… his tinnitus had spiked during the lockdown… I sent him a private message and I just said, on the chat, look I could really see how you were suffering and I can empathise with that… And he came back and was like, it’s really kind, it means a lot when people can see”. (P7-SG)

The digital environment

People appreciated the translation of a familiar structure, “how I’d expect it to be” (P1-SG) online. However, online working impeded some social connection if participants suspected that others “aren’t engaged in the meeting” because you can hear them “sipping tea, typing, doing other things” that wouldn’t happen in person (P2-SG). There were no informal “chatting” opportunities to build relationships with people who you might have “got on quite well with” (P7-SG). There was some loss of non-verbal communication, body language, and the natural “flow” of conversation (P2-SG). This seemed to be a greater issue in the support group, probably due to its more interactive and flexible structure.

“… it felt more regimented [than a face-to-face] situation so the dynamic was slightly different”. (P9-SG).

Despite it being “not quite the same as being sat in a room” (P12-WS) many felt that “the interaction can be the same” and didn’t “see the difference in benefit from a face-to-face support group with 20 people” (P14-WS). This required good facilitation of the online space, by leading discussions and inviting participants to contribute. The online format worked well for the workshop, improving confidence in those wishing to contribute “either through audio speech or via the chat” (P15-WS), and allowing those less comfortable with interaction to be quiet.

“… the workshop, being like this, was a lot better. Because you were listening to everybody else. You didn’t feel restricted… because of the shyness… the inhibition seemed to be a lot less… it was actually quite comfortable to dip in and come out”. (P16-WS)

Technology was an initial barrier for some: “I know it sounds like the whole world is on Zoom, but they aren’t necessarily” (P12-WS), but this was quickly solved by help from the BTA.

Overarching theme 2: being reliably informed

Participants valued professional facilitators (“it was extremely positive to have BTA support”- (P9-SG); “somebody who’s respected… I found that invaluable” (P12-WS), making groups feel reliable, varied, smooth-running, supportive and active. This engendered trust, hope, motivation and engagement.

Reliable sources of information

Professional facilitation created a milieu where people felt safe, heard and able to ask anything: “no one was made to feel like they had asked a silly question… everyone was listening” (P11-WS). Whether speaking or typing in the “chat” function, no one was “just ignored” (P15-WS). Structured sessions, moderation and follow-up informational emails meant that participants could “make their own investigations” (P12-WS).

With a plethora of tinnitus-information available online (McKearney et al. 2018), and some healthcare professionals lacking training in tinnitus, it is difficult to identify reputable sources of information (Fackrell et al. 2012), leading people to feel lost or overwhelmed. The groups countered this with “really reassuring” (P3-SG) information and advice.

“I’ve done some research, but you never know… if that’s correct… By seeing the information there and then and [facilitator] going through it, I feel like I’ve got a trust with her, but I hadn’t got that with my GP, she had just brushed it off”. (P17-WS)

Participants appreciated information that was accessible, educational not overly-medicalised, to take away and explore, and this in itself was therapeutic.

“It was very understandable for a lay person…. this time, I actually, really sort of understood it more clearly… understanding it that little bit better, really does help”. (P16-WS)

The range of participants meant there were a range of needs, some needing information on causes and mechanisms and others needing more practical tools for tinnitus management.

“… different people get different things out of it so I can see why they cover lots of different types of strategies and different content, because someone might like to know the science behind it… other people… mindfulness, wellbeing, relaxation techniques”. (P11-WS)

The presence of a professional gave participants confidence in experimenting with strategies suggested from others in the group too.

“Some of the tips are really good, but there are some that don’t apply to me… that was really, really brilliant… you can always learn new stuff, so even if you hear something again like about the mindfulness, you might not have been practicing it as much so to re-visit it”. (P3-SG)

A bonus of the digital format was the ease with sharing information, including tips from each other put in the chat. This helped with utilisation of specific strategies after the session.

Specific strategies

The groups gave empowered individuals who took “ownership of the tinnitus by actually attending” (P10-WS), renewing their energy for action.

“For me it’s had a very positive impact in regards to what I have put in place, from a mental perspective, I obviously feel much more positive about group sessions and as I said, I’ve reached out to join a face-to-face one”. (P7-SG)

The varied experiences within the group helped people to realise that there is “no right or wrong thing to do” (P14-WS), that “will work for all” (P8-SG), liberating them to try new things. There were mixed opinions about psychological approaches; some preferred a mechanistic focus on “what causes it, what can I do to try and ease it” (P2-SG), others had found previous psychological approaches unsuccessful: “I’ve tried and I’ve not myself got much out of” (P1-SG). However, psychologically-grounded advice such as the gratitude diary was seen as helpful (P11-WS).

Overarching theme 3: living better with tinnitus

Outcomes associated with both groups included new social connections, improved management and acceptance of tinnitus. Participant 13 (who had attended both groups) suggested the main difference lay in group focus rather than outcomes: “The workshop was more focussed… about tinnitus. The support group was more focussed on how you react to your tinnitus”.

Improved management

Tinnitus management techniques were developed or refined. Although tinnitus remained bothersome, people described having fewer tinnitus “spikes”, important shifts in perspective and feeling more empowered by knowing “a way forward now” (P15-WS).

“I think the more I listen and the more I research and the more I attend the groups, the better I am going to get at being able to manage it… I can kind of see a path forward. It doesn’t seem like a dark room that I’m never going to get out of. I’m like, I know how to turn on the light now”. (P3-SG)

Participants spoke about how their beliefs changed, the groups helped them by “putting everything into perspective, instead of catastrophizing” (P8-WS) This has potentially long-term implications, considering the evidence that catastrophic cognitions about tinnitus are associated with long-term distress and disability (Cima et al. 2011; Handscomb et al. 2017).

“It’s definitely shifted my thinking from being pessimistic to very positive and I couldn’t recommend it enough to people”. (P7-SG)

For some, the groups led to increased salience of tinnitus. This is to be expected as tinnitus awareness relates to attentional processes (Marks et al. 2020). Although a possible negative outcome, it was short lived.

“I find if I talk about it, I notice it more… It did make my tinnitus worse, whilst I was in the group… That was the only downside”. (P17-WS)

Acceptance

In line with other research, participants described letting go of their struggle with tinnitus “because you can’t fight it” and moving towards “accepting” it (P6-SG). Participants began to realise that although “there’s no cure”, many things can help them. Acceptance was a process, and sometimes a long road, and although the groups didn’t get everyone to that place, they did support help most people start to develop a new relationship to tinnitus.

“I’ve also worked really hard on, and as simple as it sounds, accepting it. Just saying ‘right yes it’s there, but it’s not me, it’s something else. I can let it be there, have its own space, but I can carry on.’ And I’ve been trying to practice that quite a lot”. (P15-WS)

For those participants at earlier stages of the acceptance process, understanding tinnitus mechanisms seemed more important. This enabled them to realise that even if they had unanswered questions about tinnitus, this was part of moving towards acceptance by acknowledging that “there’s no definitive answers” (P1-SG), and “it is just what it is” (P4-SG).

“In many ways it’s about accepting that it’s there. It boils down to the fact there’s nothing you can do about it so you might as well live with it and get on with your life. It can take quite a long time to come to that realisation…” (P12-WS)

Experience and expectations

Tinnitus duration varied across participants, which affected expectations and outcomes. People with long-standing tinnitus spoke of the benefits from realising “so many people are in the same boat” and being able to support people with new tinnitus as “it can be really horrible for the first couple of years” (P11-WS). The workshops covered the basics, so everyone could have “the same level of information” (P15-WS), and then the group worked together. The amount learnt by participants seemed to relate more to tinnitus duration than type of group attended.

“I’ve had it for so long, I’ve learnt to deal with it anyway. I think lots of people… who are only just getting tinnitus, I think got a lot more out of it in terms of their strategies”. (P11-WS)

For those who had actively sought out a support network during Covid-19, the online groups were highly valued and they engaged quickly.

“I just went out searching to see what information was and … I don’t know more by luck than judgement, just came across the Tinnitus Association, and then… these online support groups…” (P4-SG)

For others, support groups were seen as less ideal, and engagement took longer, but this did not appear to impede benefits.

“I was a little sceptical about going into a support group… I had very, very low expectations of it. And it’s been absolutely bloody brilliant. It has mainly made me be not so bloody sceptical, I can be a bit more open, because it has had a massive positive impact”. (P7-SG)

Context of the study: Covid-19

Many described a negative impact of the pandemic on tinnitus, linked to increased levels of general stress especially at the start (“I had a really big spike obviously when the lockdown came” – P3-SG), in line with evidence that tinnitus is exacerbated by stressful situations (Mazurek et al. 2019). Stress was compounded by lifestyle changes during lockdown; increasing daily demands, social isolation, limited activities, with tinnitus becoming more intrusive. Despite this unusual context, many hoped that online groups would continue after the pandemic, seeing the relevance of digital interventions in today’s world. It is not possible to extrapolate whether the popularity of such groups will continue as pandemic restrictions fade.

Discussion

Three over-arching themes emerged from the Thematic Analysis of online tinnitus support groups and educational workshops: feeling part of a community, being reliably informed, and living better with tinnitus, all within the context of a global pandemic. Notably, these themes map closely onto existing research into how people experience tinnitus groups delivered in other formats. For example, Pryce et al. (2019) found that the key mechanisms participants described as most helpful from in-person support groups, were informing coping, constructing a shared social identity, fostering a sense of belonging and maintaining hope. Our study demonstrates that these themes were present in both workshops and support groups, and were so similar that they applied to the whole dataset.

Context and digital interventions

With Covid-19 increasing tinnitus distress and isolation for some (Beukes et al. 2020) and a reduction of services during lockdown, these groups provided an important resource. Although the pandemic was the reason for creating these groups, these results suggest that they may continue to have value in a post-pandemic world. This fits with a growing trend across the healthcare sector for new types of digital intervention (Webster 2020), that can improve accessibility, scalability and cost-effectiveness. Clearly this research cannot comment on effectiveness or efficacy, however the positive responses by participants here indicate a need for more research and development of digital tinnitus groups.

Participants highlighted the benefits of accessibility, diversity (of age) and helping individuals less confident in speaking up. The key therapeutic factors identified (social connection, reduced isolation and shared stories and learning) are common to support groups (Kofahl 2018; Pryce et al. 2019) and appear to be retained in a digital format. A small minority felt less connected than they would in person, perhaps indicating individual differences in preferences for online interventions, and the need for a range of options. In some cases, the digital group created stronger participant-engagement with materials discussed, and an appreciation for a summary of these in a follow-up email. There were few specific comments on different modes of interaction (e.g. use of chat function, breakout rooms etc), and more specific feedback from future groups about helpful features of video platforms would be useful. Comparative research between experiences and outcomes of different group formats would also be of interest.

Reported drawbacks of the online format are difficulties in engaging with people in a serendipitous way, such as over a coffee-break. Future research could examine ways of developing such experiences digitally. This chimes with the request particularly from workshop participants for ways of following up and maintaining new connections from the group. A sense of group identity is known to support wellbeing (Wakefield et al. 2019) and positive social dynamics in tinnitus groups have therapeutic effects (Thompson et al. 2011). Both are likely to grow stronger when groups meet regularly.

Types of learning

Participation involved a mix of upward and downward social comparisons, negative experiences (fear, jealousy) and positive experiences (compassion and motivation) typical to group therapies (e.g. Marks et al. 2020). To minimise harm and maximise benefits, careful facilitation should normalise these responses and keep discussion focussed on helpful topics. A facilitator linked to the BTA appeared to enhance engagement, trust and positive experiences in these groups. The digital format creates more opportunities for BTA professionals to attend, and this could improve the effectiveness of support and information groups, but further research is required.

Both types of group involved similar types of learning, albeit through slightly different pathways. Whilst the support groups involved more focus on learning from others’ experiences, the workshop involved more education by a professional about tinnitus mechanisms and management. More than “type of group” the individuals’ own lived experience of tinnitus and preferences for treatment seemed to determine how much they learnt. Perhaps this relates to professional facilitation, whereby participants were guided to learn from one another, with confidence engendered by their professional approval of other people’s suggestions.

It was encouraging to see that reduced catastrophic thinking was a theme emerging from both groups. This finding is usually reported as a positive outcome following more cognitive behavioural interventions (Fuller et al. 2020). Although the groups here are less intensive than CBT, they offer the potential for early intervention to reduce catastrophic thinking, possibly putting people on the path to recovery before they become entrenched in negative thought-feeling-behaviour cycles that maintain tinnitus distress (Handscomb et al. 2020). It is not possible to determine such long-term changes from the current study, but future research could investigate whether such groups might offer new, accessible ways of preventing long-term tinnitus distress.

Acceptance was described as a key aspect for living well with tinnitus. This did not appear to come directly from the groups, although they seemed to support this process. Furthermore, this journey of acceptance was a message that many participants described as important, and something they learnt to regard as a change that takes time, with everyone at a different stage. As such, groups must be able to meet participants at their current stage and so be able to cater to a range of requirements.

Strengths and limitations

This novel study offers insight to how people with tinnitus experience different online groups, and the important benefits even these low intensity interventions can have. Limitations include the risk of self-selection bias (those completing interviews may have included only those who enjoyed the groups) limiting assessment of negative aspects of the group. The sample lacked diversity and was selected on a “first come, first served” basis, meaning that a full range of views may not have been obtained. The author who delivered the workshop was involved in the write up of the study (however they did not conduct any interviews and only contributed to theme refinement, not theme development). It would have been beneficial to have additional information about participants related to demographics, tinnitus duration and other hearing issues.

Clinical suggestions and future directions

There is clear potential for online tinnitus support and our findings offer suggestions for how best to deliver support groups and workshops online. These are described in more detail in Supplemental Table 2, but key points are:

• Have a well-trained facilitator affiliated with a trusted body.

• Enhance social connection between group members.

• Maximise the benefits offered by online platforms.

• Make the groups more accessible and inclusive.

• Maximise the benefits of positive emotional impacts and potential negative impacts.

• Find ways to reduce catastrophic thinking, particularly in early-onset tinnitus.

• Remember acceptance is a journey, individuals will be at different stages, so a range of approaches will be required.

Future research should investigate how well online groups can grow community and connection, and the size of effect these interventions can have on reducing the impact of tinnitus in people’s lives. The current research, in describing participant experiences of digital groups, can only indicate aspects of the process that may be beneficial to develop, rather than actual outcomes and effectiveness.

It remains to be seen whether the popularity and positive evaluation of such groups would be maintained outside the context of a pandemic, as face to face encounters become more feasible. However, in the last year, the BTA have run workshops and support groups for musicians. This suggests that specialist groups could developed using online platforms, this increases their geographical scope. Perhaps other specialist groups in the future focus on recent onset tinnitus.

Conclusion

Participants reported significant benefits from both online support groups and educational workshops; in particular, social support, increased knowledge about tinnitus and improved management strategies. People valued feeling supported by others with tinnitus and interacting with a facilitator who they perceived as knowledgeable, skilled and trustworthy. Attendees appreciated being able to access help online during lockdown, but groups were not considered merely as a temporary substitute for meeting in person. Similar online groups could offer an accessible, low-cost and helpful resource for people with tinnitus even after COVID-19 restrictions are lifted.

Ethical approval

Ethical approval was granted by the Psychology Research Ethics Committee, University of Bath (ref: 20-118).

Consent form

All participants were provided with a participation information sheet and completed an electronic consent form prior to interview

Acknowledgements

We thank our participants for the time they gave to take part in the interviews, and we thank Francesca Rothera and Arabella Freeman for contributing to data collection, collation and analysis.

Disclosure statement

The authors have no conflict of interest. The second author (LH) is a trustee of the BTA, and received payment for the delivery of the digital workshops.

Data availability statement

The data that support the findings of this study are available in anonymised form from the corresponding author upon request.

Correction Statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.

Additional information

Funding

Funding for this study was provided by the BTA.