**3. Ménière's and mental health at the individual level**

Complementing the population-level analyses, Phase II adopted an in-depth qualitative approach to understand and contextualise people's experiences of Ménière's in their everyday lives. Ethical approval for this phase of the study was secured from the University of Exeter Medical School Research Ethics Committee (Approval Reference 13/09/029).

#### **3.1. Phase II method**

With the assistance of the Ménière's Society UK, a purposive sample of 20 Ménière's patients was recruited from across south west England, focusing on individuals diagnosed by an Ear Nose and Throat consultant, reporting symptoms within the previous 12 months (see **Table 2** for sample composition). Purposive sampling allowed information-rich views to be shared by individuals at different stages of the condition, offering insights into the variability of the condition rather than focusing only on the 'typical' or average case [11]. Four participants requested that their partners be present during their interviews, offering emotional support and also providing valuable perspectives on the shared effort of managing and adapting to the onset and progression of Ménière's [12]. A further eight semi-structured interviews were undertaken with partners of other participants to examine these shared and relational impacts in more detail.

Data collection commenced in June 2015, with interviews lasting between 1 and 3.5 hours, all conducted at a time and place of participants' choosing. A flexible interview guide was developed to inform the interview process, using open questions and active listening techniques to facilitate participant-led, open-ended responses. All of the interviews began by giving participants an opportunity to reflect (in their own words) on what was happening in their lives when they first started experiencing symptoms and how things had progressed from there. Follow-up questions focused on: participant interpretations, perceptions of their everyday experiences of the condition; the perceived impacts of the condition on their mental health, Living with Ménière's Disease: Understanding Patient Experiences of Mental Health and Well-Being in Everyday Life http://dx.doi.org/10.5772/66391 17


**Table 2.** Sample composition for the qualitative study.

**3. Ménière's and mental health at the individual level**

**3.1. Phase II method**

duration (*P*<0.01).

16 Up to Date on Meniere's Disease

impacts in more detail.

Medical School Research Ethics Committee (Approval Reference 13/09/029).

Complementing the population-level analyses, Phase II adopted an in-depth qualitative approach to understand and contextualise people's experiences of Ménière's in their everyday lives. Ethical approval for this phase of the study was secured from the University of Exeter

**Figure 4.** Scatter plot representing how health satisfaction within the Ménière's sufferers changes with time since diagnosis. Regression analysis indicated a significant relationship between overall health satisfaction and disease

With the assistance of the Ménière's Society UK, a purposive sample of 20 Ménière's patients was recruited from across south west England, focusing on individuals diagnosed by an Ear Nose and Throat consultant, reporting symptoms within the previous 12 months (see **Table 2** for sample composition). Purposive sampling allowed information-rich views to be shared by individuals at different stages of the condition, offering insights into the variability of the condition rather than focusing only on the 'typical' or average case [11]. Four participants requested that their partners be present during their interviews, offering emotional support and also providing valuable perspectives on the shared effort of managing and adapting to the onset and progression of Ménière's [12]. A further eight semi-structured interviews were undertaken with partners of other participants to examine these shared and relational

Data collection commenced in June 2015, with interviews lasting between 1 and 3.5 hours, all conducted at a time and place of participants' choosing. A flexible interview guide was developed to inform the interview process, using open questions and active listening techniques to facilitate participant-led, open-ended responses. All of the interviews began by giving participants an opportunity to reflect (in their own words) on what was happening in their lives when they first started experiencing symptoms and how things had progressed from there. Follow-up questions focused on: participant interpretations, perceptions of their everyday experiences of the condition; the perceived impacts of the condition on their mental health, social roles and identities, friendships and relationships; interactions with the medical profession; the mechanisms by which they tried to self-manage and adapt to the condition over time; and the role of social support in this process.

Interview transcripts were anonymised, checked against the original interview recordings and copies sent back to participants for member-checking purposes [13]. After a period of data immersion, listening back to recordings and annotating transcripts with initial codes and themes, a copy of each transcript and an initial thematic coding framework were uploaded to NVivo 10 (qualitative data management software). Each transcript was then subject to further thematic narrative analysis [14], with the aim of situating emerging themes within each participant's life story, and identifying more subtle, intersecting themes within the data [15]. In order to ensure the analysis and interpretations resonated with individuals living with Ménière's, the early findings were shared and discussed with members of a Ménière's support group in August 2015.

#### **3.2. Phase II results**

A key aim of Phase II was to understand more about the adverse mental health impacts observed with the onset and progression of Ménière's, and how participants experienced and negotiated these impacts during their everyday lives. We explore this further in what follows, focusing particularly on the strategies used to adapt to a life of uncertainty in the face of Ménière's, and the roles of supportive partners, family and friends in this process.

Recurring throughout participants' narratives were anxieties linked to the sudden onset of symptoms (vertigo in particular), their varying severity and the unpredictable progression of the condition [16–18]. The accumulation of these anxieties over time resulted in a significant loss of confidence, independence and a deep sense of frustration amongst participants, who likened it to 'driving a car with a dodgy break' and serving a 'prison sentence' with no clear release date. Given the limited efficacy of medication or surgery in treating the condition, participants (and their families) felt powerless in many respects, with even long-term sufferers describing it as 'an alien being' sitting in the body. Throughout participants' interviews, it was apparent that the process of adjusting to life with Ménière's was experienced as a steep and emotionally challenging learning curve, often requiring significant compromises to everyday practices and pleasures.

Participants described lifestyle shifts made in an effort to regain some semblance of control over Ménière's, be they diet-related, or focused more on physical activity, rest and relaxation. Some of these were in response to recommendations from their Ear Nose and Throat consultants (e.g. reducing salt, caffeine and alcohol), whereas others were strategies they had identified through trial and error in the process of learning to 'read' their body as the condition progressed. These included, for example, the use of specific vitamin supplements, postural adjustments, finding activities that would build their core strength without aggravating symptoms (e.g. modified versions of yoga, pilates, tai chi) and maximising sleep and rest where possible. However, participants warned against being overly simplistic in drawing links between stress, relaxation and vertigo severity. Many identified occasions when they had been under significant stress and not had a vertigo attack, or at their most relaxed and still had an attack. As such, although participants engaged in efforts to minimise stress and maximise opportunities for rest and relaxation, they indicated these stress pathways to be complex, inconsistent and intertwined with other factors going on in their lives at the time.

social roles and identities, friendships and relationships; interactions with the medical profession; the mechanisms by which they tried to self-manage and adapt to the condition over

Interview transcripts were anonymised, checked against the original interview recordings and copies sent back to participants for member-checking purposes [13]. After a period of data immersion, listening back to recordings and annotating transcripts with initial codes and themes, a copy of each transcript and an initial thematic coding framework were uploaded to NVivo 10 (qualitative data management software). Each transcript was then subject to further thematic narrative analysis [14], with the aim of situating emerging themes within each participant's life story, and identifying more subtle, intersecting themes within the data [15]. In order to ensure the analysis and interpretations resonated with individuals living with Ménière's, the early findings were shared and discussed with members of a Ménière's support

A key aim of Phase II was to understand more about the adverse mental health impacts observed with the onset and progression of Ménière's, and how participants experienced and negotiated these impacts during their everyday lives. We explore this further in what follows, focusing particularly on the strategies used to adapt to a life of uncertainty in the face of

Recurring throughout participants' narratives were anxieties linked to the sudden onset of symptoms (vertigo in particular), their varying severity and the unpredictable progression of the condition [16–18]. The accumulation of these anxieties over time resulted in a significant loss of confidence, independence and a deep sense of frustration amongst participants, who likened it to 'driving a car with a dodgy break' and serving a 'prison sentence' with no clear release date. Given the limited efficacy of medication or surgery in treating the condition, participants (and their families) felt powerless in many respects, with even long-term sufferers describing it as 'an alien being' sitting in the body. Throughout participants' interviews, it was apparent that the process of adjusting to life with Ménière's was experienced as a steep and emotionally challenging learning curve, often requiring significant compromises to everyday

Participants described lifestyle shifts made in an effort to regain some semblance of control over Ménière's, be they diet-related, or focused more on physical activity, rest and relaxation. Some of these were in response to recommendations from their Ear Nose and Throat consultants (e.g. reducing salt, caffeine and alcohol), whereas others were strategies they had identified through trial and error in the process of learning to 'read' their body as the condition progressed. These included, for example, the use of specific vitamin supplements, postural adjustments, finding activities that would build their core strength without aggravating symptoms (e.g. modified versions of yoga, pilates, tai chi) and maximising sleep and rest where possible. However, participants warned against being overly simplistic in drawing links between stress, relaxation and vertigo severity. Many identified occasions when they had been under significant stress and not had a vertigo attack, or at their most relaxed and

Ménière's, and the roles of supportive partners, family and friends in this process.

time; and the role of social support in this process.

group in August 2015.

18 Up to Date on Meniere's Disease

practices and pleasures.

**3.2. Phase II results**

Managing anxiety was highlighted as particularly challenging, even amongst those who had lived with the condition for over 10 years, with many describing a 'shrinking world', loss of spontaneity and sense of isolation. While participants perceived varied potential in counselling, cognitive behavioural therapy and mindfulness interventions, many called for improved access to tailored psychological support from therapists able to appreciate and work with the tangible physical underpinnings of their anxieties. Some conveyed a 'ride the storm' mentality, combining determination with careful contingency strategies in order to cope with the unpredictability of the condition. These participants often described strategies used to distract themselves during less acute, but nonetheless destabilising, stages of an attack, be it watching the clouds through the bedroom window, listening to the radio or taking comfort from the companionship of a quiet cat or dog (reflecting wider literature on the value of companion animals in coping with long-term chronic illness [19, 20]).

**Debbie:** *'I find having a dog helps, especially this one… I find that touching her does make me feel better… it makes me feel like life's worth living really… She lays still – if she was jumping about I wouldn't be able to stand it, but she seems to sense when I'm not very well and she stays so close to me and still that it does make a difference'.*

Contingency strategies ranged from keeping anti-sickness medication in every pocket/bag, carrying sick bags, tissues, a torch (in winter with shorter hours of daylight), using ear defenders (in noisy settings), wearing sunglasses (to avoid bright light triggers, particularly those living with Ménière's and migraine) and wearing a medical bracelet to convey their emergency contact details if out alone. Perhaps the most important contingency strategy discussed by participants was the role of a reliable support network, be it partners, family or friends, as illustrated in the extract from Dawn's interview below.

**Dawn:** *'You don't ever feel like "Oh I'm better now, I'll move on." Not completely. There's a little, small percentage of you that's thinking, "Am I going to be okay doing this?"… I have to have a back‐up plan. Like, my back‐up plan now is that I've trained my husband to actually have his mobile phone with him all the time, which is a massive breakthrough, trust me!'*

Once 'rescued' and brought back to the familiarity of home (described by one participant as their 'cave'), participants explained that they preferred to be left alone to ride out the attack, knowing that someone would be there if needed. In part, this links to feelings of social embarrassment about one's physical state during an attack, but also to the sense that others cannot do much to help at that stage anyway. The increased reliance on partners, family and friends to fulfil this support role was upsetting for some participants, particularly when they felt their condition was compromising the independence of others as well as their own. As one partner commented (the husband of a participant with long-term Ménière's), 'it's not a disease one person gets – if it's a couple, it's a disease that two people get'. Participants, including those with Ménière's and the partners interviewed, explained the need to find a balance between being stoic whilst also recognising limitations. This is illustrated in the extract from Toby's interview below (husband of a participant trying to adapt to bilateral Ménière's).

**Toby:** *'I mean she probably thinks it's bothered me more than it actually has. The bit that bothers me is to see her suffering. I don't care that I can't go to a pub or cinema… I really don't care about that. She's very stoic, I say this to people – she wouldn't have any gas and air when she had the children. She's a right little tough nut… I mean she won't let it beat her. She'll just, you know, she'll do different‐, we'll just do different things'.*

In this extract, Toby draws on an earlier biographical experience (childbirth) to emphasise and show respect for his wife's strength and determination, noting the shared process of finding alternative activities to do together that better accommodate the needs of the condition. Although this was recognised as difficult in particularly active phases of vertigo, several participants described positive examples, including going on outdoor walks, finding quiet pubs/ restaurants for lunch or dinner (sitting outside weather-permitting or eating early indoors to avoid crowds and noise), people watching by the coast and visiting nature-based/heritage attractions at quiet times of the day/year. Although this process of finding compensations be it alone or with a partner, family or friends—often took time, it was deemed particularly important amongst longer-term sufferers:

**Emma:** *'With the gap that's created by perhaps not being able to do what you would normally do, try and fill it with something else that brings you happiness and pleasure… I've done loads of sewing… and I make these little bags – this is my therapy – I like to have something to show for my day… I've chosen fabrics which are nice and tactile, and in fact I've got a delivery coming today of really amazing bright coloured velvets with velvet silk!'*

Finding these personal 'havens' [21] sometimes required significant (and ongoing) shifts in aspirations and outlook over time, with participants coming to value pleasures and activities they had previously taken for granted. This is indicated in the interview extract below from a participant who had lived with severe symptoms for over 12 years:

**Emily:** *'I was sort of going along, going along, going along, going along, and then somewhere along this path, I thought "Hang on, we don't do anything. I haven't got a life". I, I, I existed, but I hadn't got a life… But now we have found little places where we can go, so we have got a bit of a life now'.*

The importance of 'counting blessings' came through as particularly important in the interviews of longer-term sufferers. Participants talked about trying to focus on the 'good' things in their lives, making the most of remission phases and cherishing the support networks they have in place to co-navigate the condition. This is conveyed in the extract from Becky's interview below; Becky had lived with Ménière's since she was 17 years old. In her early thirties at the time of the interview, and having recently become a parent, she described the changes in her attitude to the condition since starting to experience bilateral symptoms of tinnitus and imbalance:

**Becky:** *'I've changed so much in how I've dealt with it. Because before I would have been like, "Oh just get on with it!" to other Ménière's people, you know, "I did". But now I completely understand how devastating an illness it can be… So I just, I'm grateful for each day of normality… I still appreciate living in the now, and living when like my balance is good, and my hearing is good, and the tinnitus isn't so bad… just very much, counting my blessings… focusing on what's good rather than what might happen'.*

Several participants used hope to maintain a sense of morale during the most challenging phases of the condition, particularly with regards to the potential for future medical and technological advances (e.g. stem cells, refined hearing aid and directional microphone technology, etc.) to bring greater understanding of, and predictability to, their condition. Indeed, two participants expressed a reluctance to undergo any of the (albeit limited) surgical procedures currently available for fear of compromising their eligibility for any better, more appealing options emerging further down the line. This touches on the recognition in the wider long-term illness literature that 'absolute faith in medicine may be problematic, prohibit change and be constraining to live by' [22]. As such, it seems important for participants to find a balance between taking comfort from those hopes while also allowing themselves to use all the resources available in the present to fully accept and adapt to their current situation.
