Self-care/self-help strategies for persons with Ménière’s disease: a systematic review

Figures & data

Figure 1 Flow chart of review process.

Abbreviations: CBT, cognitive behavioral therapy; SR, systematic review; MD, Ménière’s disease.

Table 1 Evidence table of included studies

Study	Main study objective	Study type, country and recruitment source	Treatment and participants	Confirmed diagnosis and length of time with condition	Key findings	Summary evaluation comments	Overall evidence quality*
Stress-related coping strategies
Hägnebo et al^Citation31 (1999)	To investigate if stress-related coping strategies predicted perceived handicap for dizziness, reported discomfort from illness, and anxiety sensitivity in persons with MD	Swedish cross-sectional survey, using postal questionnaires and correlational analysis Recruitment from a MD patient association (117 members) in one city	N=50; 65 completed questionnaires (response rate, 56%); 15 not meeting eligibility criteria (11 “no exposure” to stress; four due to unconfirmed MD) Respondents: 32 (64%) female; mean age of 56 years	Medical diagnosis reported by participants Mean MD duration of 12 years	Three coping strategies correlated with dizziness: escape/avoidance and distancing positively and self-controlling negatively. Accepting responsibility and escape/avoidance correlated with anxiety sensitivity.	The study is well designed and uses used a set of validated postal questionnaires to explore the study objective. The sample size is on the small side for substantial confidence, and thus wider generalization, to be placed in the resultant correlation sizes. The findings are well discussed in relation to general coping strategies and associated literature, adding to the strength of the study. The authors pointed to some study including: reliance on self-reported medical diagnosis of MD, use of a volunteer non-random sample and a problematic, low response rate. In general, it is likely that those most bothered by MD would take part in the study. The authors’ conclusion that cognitive and behavioral factors should be taken into account in medical management and counseling is supported by the correlational evidence.	75% +
Self-help - cognitive behavioral therapy (CBT) approach
Yardley and Kirby^Citation38 (2006)	evaluate if booklet-based education in symptom management and CBT techniques could help in management of vertigo and dizziness	UK randomized controlled trials, (2 intervention, 1 WLC) Recruitment in 2003: all, members of the UK Ménière’s Society (n=4,800; 381 expressed interest; 360 met eligibility criteria) ethically approved study	WLC; N=360; 120 participants in each of the three groups 6 months, 5% drop-out overall Treatment: VR, to promote adaptation within the balance system, designed by health care practitioner SC using applied relaxation, controlled breathing, and cognitive behavioral strategies WLC	Confirmed diagnosis unclear - (although highly likely) Time with MD not stated	At 3 and 6 months: both VR and SC groups reported improvement vs WLC (6 months: 38% VR, 39% SC vs 16% WLC); both VR and SC significantly different from WLC but not from one another. Patient enablement scores significantly higher.	Novel and useful first study of VR in MD and comparison of VR and SC and self-help booklets, designed by health care practitioners. RCT soundly conducted, appropriate participant recruitment source, good detail on intervention, sample size based on previous study with 90% power and 5% significance level to detect effect size of d=0.5, appropriate outcome measures (self-perceived health-related) and adequate follow-up time and low loss to follow-up.	90% ++
Self-help - “finding your own way”					Significant difference in adherence between VR and SC (50% SC vs 38% VR), and greater improvement for those reporting adherence.	Authors pointed to some study limitations (volunteer sample; possible that those perceiving they were most in need of the offered interventions more likely to agree to participate). Sustainability of use of VR and SC remains for future study. Authors’ conclusion (self-help management booklets may result in greater subjective improvement in health and confidence in understanding and coping) fits the evidence. Implications: Potential of self-help booklet, based on VR and SC, to offer an inexpensive, non-harmful, and effective means of addressing unmet information needs and increasing sense of well-being and control over the illness.
Long and Bennett^Citation29 (2009)	Identify significant events for persons searching for complementary and alternative medicine (CAM). The ways they coped with the impact of MD and their use of CAM and perceived benefits.	Narrative design and documentary analysis; qualitative research UK and Australia (Victoria) Recruitment, 2004–2005 via web sites of UK and Australia Ménière’s Societies Ethically approved study	N=20 participants’ stories of experience with MD and use of CAM (UK, 15; Australia 5), 23 letters in UK newsletter, Spine UK: Two-thirds female; median age, 58 Australian: all female; median age, 59	Confirmed Median time with MD: 11 years (UK) and 21 years (Australia)	Findings demonstrate personal nature and diversity of participants’ journeys in their search for better, and nonbiomedical, ways to cope with their MD, and role of significant events (eg, increased attack frequency or severity of the condition) and others (eg, family member, friend, GP) in influencing or helping them in their search. No single CAM approach or pathway was evident. The most common CAMs used were energy-related (eg, acupuncture, reflexology), herbal and vitamin supplements, and dietary changes. “Finding your own way” depicted the diversity in journeys in finding ways to cope with MD.	Appropriately conducted narrative study soundly conducted. Guidance provided to participants on material sought; strong theme-based qualitative data analysis approach (multiple readings; identifying effects, approaches and experiences with CAM use in multiple phases of their illness trajectory; identification of themes) and conducted by the two authors independently; interpretation of patient account plausible and research-based (“their interpretations of situation” at time of writing).^Citation36,Citation37 Study presents a model (appropriately depicted as tentative and requiring further research with other participants) of coping strategies (including CAM) for MD. Authors draw attention to study limitations (small-scale; participants volunteers who responded to the advertisement about the project; participants more likely those who had tried CAM with some success) and strengths (personal stories, conduct of study; presentation of theoretical model of search and coping strategies). Authors’ conclusion (potential role of CAM therapies in helping people with MD find better ways to self-manage their symptoms and limit MD’s impact on their lives) fits the data. Implications: potential role of CAM as a complementary/additional way to assist in managing MD; potential for bio-medical practitioners to mention it to their patients to aid earlier location of effective ways to cope with MD.	80% ++
Kentala et al^Citation33 (2013)	Explore self-reported approaches to MD and the ways in which these could be used to help other patients	Postal questionnaire sample survey Finland Recruitment date unspecified; Every sixth patient on FMF’s membership list, 228 contacted, 183 returned questionnaire (80% response rate) Ethically approved study	Participant’s self-use of approaches to managing MD at time of sample survey Participants: 80% female, mean age 62 (SD 10)	Unclear if medically confirmed diagnosis. Mean age of onset of MD 44 years (SD =13), All with chronic MD and not at acute stage	Of the 183 participants, 23 (13%) listed no self-help techniques or stated there was none; of the remaining 160 participants, median of 3 techniques listed. 574 responses of techniques used, classified into four themes: improved lifestyle (59%); positive approach (45%); treatments (20%, of whom 21 of the 113 (19%) use of complementary therapies); and avoidance of precipitating factors (14%). 429 benefits were listed classified into four themes: Ménière’s symptoms (46%); well-being (35%); changed values (9%); and somatic symptoms (9%).	Simple concurrent, cross-sectional sample, using list sampling (which could lead to bias if ordering in the list). As participants were representative of all members of FMF, confidence in generalizing results to that group. Sound study design for study aim and good coverage of questionnaire (copy not provided with article). Good response rate (80%). Authors do not discuss any strengths or weaknesses of the study. Authors’ conclusion (self-help mainly was aimed at SC and improving well-being, with most focused on changing lifestyle) fits the reported findings. Authors suggest need for health care professionals to promote patients’ positive thinking and attitude change, incorporating this into their treatment options. They also suggest the potential of designing a web-based tutor for MD patients, drawing on their findings. Authors caution and suggest, though not based on study evidence, that tailored self-help can be potentially better achieved via the internet than booklets, though it challenges reliability and accessibility of information thereon.	75% +
MD: sense of coherence (SOC)
Soderman et al^Citation32 (2001)	Assess self-rated quality of life associated with vertigo, loss of hearing, and tinnitus in patients with MD and identify SOC	Cross-sectional, questionnaire-based study, with two reference groups Sweden Tertiary treatment center, Karolinska or Skovde; and Stockholm County MD patients, fulfilling eligibility criteria Reference group of random sample of population and patients with any peripheral vestibular disorder Ethically approved study	124 who met eligibility criterion (definite MD invited); N=112 (90%) agreed to participate Reference group n=288 (268 general and 20 other) MD patients 53, mean age and range of 28-75 (depending on previous or no medical treatment); approximately 50% were female	Confirmed 5 years for 60%-65%	Most respondents indicated good or very good QoL, with no difference in the treatment and reference groups. The SOC scale (ability to cope in stressful situations) showed a strong correlation to reported QoL, and in the regression analysis was the strongest predictor of self-rated symptom-specific QoL (ie, vertigo symptoms, hearing disability handicap, and tinnitus severity).	This is a well designed and conducted study. The sample is of good size and the study is strengthened by the inclusion of two reference group samples. Agreement of the findings to other studies in the area is pointed to and careful and appropriate conclusions are drawn from the study as well as the need to examine long-term positive effects.	96% ++
Ketola et al^Citation34 (2014)	Investigate the SOC in relation to specific symptoms, positive experiences, and participation restrictions in MD and their effect on the impact of MD and QoL	Cross-sectional study Questionnaire mailed to every sixth member of FMF; contacting 228 persons. Each sent a 26- page questionnaire - >181 respondents. A second questionnaire sent out to remainder of FMF members - >366 replied. Total sample size 547. Ethical approval not required under Finnish law for this sort of study.	Questionnaire covering: vertigo EQ-5D, tinnitus, hearing disability participation restriction and SOC (13-item SOC). Also open-ended questions asking “are there ways you can relieve or prevent your condition? If so, please list ...”; and list impacts of MD. Participants: 80% female; mean age 61 yrs. (SD =11)	Confirmed. Mean age at MD onset 43 years (SD = 13)	Ways of prevention or relief categorized into four themes: improved lifestyle, treatments, avoidance of precipitating factors, and positive thinking. Persons with higher SOC had significantly higher EQ-5D scores. High SOC was also related to fewer participation restrictions (eg, hobbies, conversation, and exercise). Those with a low SOC were significantly more likely to be anxious, depressed, feel less energetic, and more commonly report fatigue. Persons with high SOC scores were more likely to show a positive attitude, suggesting adaptation, and had a higher perception of control and self-efficacy than those with lower SOC.	The study has a two-part design for which the sample drawn for the second part is somewhat unclear. i) Greater insight is needed into the rationale for the two-part design. The first part of the design and numbers responding is identical to that reported in Stephens et al,^Citation56 raising a question whether in fact this is the same set of persons and data. This needs clarification. ii) The total response rate is unclear. iii) Greater clarity is needed over why the two sets of respondents from the two-part design are merged together for the data analysis reported in this paper. This is important to know as studying only the second set of participants (n=366) would have resulted in an adequate, good sized sample. One might query the scope of The authors’ comment that individuals can be “deliberately trained, thus improving coping ability”. However, despite referencing an earlier study to support this (Soderman et al^Citation27 2001), whether this is the case would need to be demonstrated in other research. The authors’ conclusions relating to the SOC (those with higher scores more conten with their QoL and value of positive attitudes) fit the findings presented in the study.	80% ++ t
MD: (building on) positive experiences (of persons with MD and/or their significant other)
Manchaiah et al^Citation30 (2015)	Examine evidence on positive experiences associated with acquired hearing loss, MD and tinnitus, as reported by those affected and their significant others	Literature review based on electronic search of four databases up to February 2014, conducted by two of the authors independently, then cross-checked. Studies included if adult population (> 18 years), had acquired hearing loss, and any stage in rehabilitation. No study type or language restriction.	Definition of positive experiences used in the review was: “any intrinsic experience, state or belief, or extrinsic behavior, event, or physical or social structure that people consider to be a source of mental, physical, spiritual, social, or emotional benefit in their life” (Kentala et al 2008).^Citation57 Focus on patients within any stage of rehabilitation (assessment hearing rehabilitation, or review).	Varied by study. For MD, as most studies drew on Ménière Association members, MD diagnosis was self-diagnosed	15 studies included of which six, mostly conducted in Finland, related to persons with MD (Stephens et al, 2007,^Citation56 2009,^Citation58 2010a^Citation59 and 2010b;^Citation60 Kentala et al 2008;^Citation57 Dibb 2009^61), and two significant others of a person with MD (Stephens et al 2012;^Citation62 Manchaiah et al 2013^63). Average number of positive experience per person across the three areas was 2.3. A range of positive experiences was perceived by persons with MD. Examples included: perspective on the disease, personal development, appreciation of life, and personal and/or spiritual change. There was substantial variation in the % reporting positive experiences (26%-84%). Positive experiences for significant others included: perspective of the disease, acceptance/ positive attitude, and receipt of information on MD.	This is a well designed literature review, providing an appropriate narrative overview of the evidence, given the thematic nature of the positive experiences reported. The review is conducted in a systematic manner, used appropriate search terms with two authors independently doing the searches in order to reduce chance of missing studies. No studies conducted up to February 2014 appear to have been omitted. However, it is unclear how, or if, each of the included studies was critically appraised. At the same time, useful and appropriate overview comments were providing (eg, sample sources from Ménière’s Associations members likely to be more troubled by MD or have more severe symptoms; diagnosis based on case history, not medical diagnosis; convenience samples). Inclusion criterion was that the person with MD was within the rehabilitation phase. Thus, the study would exclude any studies (if there were any) of persons who were no longer in that phase (eg, seeking alternative treatments on own volition) or their significant others. The authors’ conclusions fit the evidence (there is good evidence on positive experiences for those with acquired hearing loss, MD, and tinnitus). Useful suggestions on rehabilitation implications are drawn, including involvement of significant others and the potential on promoting positive thinking. However, one must caution against whether such an approach is appropriate for all and at any stage in the illness trajectory.	++
Pyykko et al^Citation35 (2014)	Report on positive experiences of significant others of patients with hearing and balance disorders	Findings reported in a “Letter to the Editor” on three cross-sectional studies, two conducted in wales and one in Finland (MD participants only) on significant others of persons with hearing loss, including MD	Use of open-ended questionnaire, asking about the positive experiences of the significant other	For MD, drawn from Ménière’s Association, thus not necessarily medically confirmed MD	All participants were able to identify one or more positive experiences. For example, participants in the 2013 Finnish study pointed to: improved relationships, acceptance of positive attitude, perspective of MD, treatment- related benefits, and information and support provided.	Only limited detail is thus provided on the individual studies (all referenced). The aim is rather to draw readers’ attention to evidence on positive experiences of significant others in contrast to commonly exploring the effects, and thus, more likely, negative effects and experiences. Draws out interesting implications for rehabilitation (in particular, involvement of significant others in rehabilitation), drawing on the approach of positive psychology.	+

Notes: *Graded according to either the Quality of Study Rating Form (%) or according to the NICE 2012 quality assessment criteria (+, good quality; ++, highest quality).^26,28

Abbreviations: MD, Ménière’s disease; WLC, wait list control; CBT, cognitive behavioral therapy; FMF, Finnish Ménière’s Federation; SD, standard deviation; VR, vestibular rehabilitation; SC, symptom control; CAM, complementary and alternative medicine; SOC, sense of coherence; QoL, quality of life; EQ-5D,s EuroQol 5D (dimensional) quality of life measure.

Table 2 Underlying theoretical perspectives

Self-help approach	Studies	Theoretical perspective
Stress-related coping strategies	Hägnebo et al^Citation31 (1999) Yardley and Beech^20 (1998)	Social-psychological, coping theoretical perspective. Draws on the theories of Folkman and Lazarus^Citation7 and Lazarus (1993)^Citation40 on stress, personality and cognitive factors, and coping strategies. Socio-cultural perspective of coping. This explores the socio-cultural meaning and intelligibility on ill-health, distress ascribed by the person, with coping behavior interpreted as a mode of individual-society interaction. Also adopts a post-structuralist, deconstruction approach with emphasis on “current” representation within the person’s (personal and socio-culturally) embodied life.
Cognitive behavioral therapy	Yardley and Kirby^Citation38 (2006)	Cognitive behavioral therapy and behavioral change, with an orientation toward “goal change”.
Self-identification: “finding your own way”	Nyenhuis et al^Citation21 (2013) Long and Bennett^Citation29 (2009) Kentala et al^33 (2013)	Cognitive behavioral therapy, psychological perspective. Illness disruption and coping for persons experiencing chronic illness (Bury,^1 Williams^3); whole person, mind-body perspective, drawn from complementary and alternative medicine;^42 and narratives based on Frank’s^36,37 interpretation of a narrative as an individual’s “interpretation of their situation” at the time of its construction/writing. Unclear. Empirically focused to uncover individuals’ self-help techniques. At least implicitly drawing on the notion of self/health agency.
Sense of coherence (SOC)	Soderman et al^Citation32 (2001)	Drawing on Antonovsky’s^5 concepts of salutogenesis (the origin of health and associated concept of the SOC). Moving beyond a perception of coping as mechanism as buffers or moderators as stressors are ubiquitous in society. A focus on the means of helping oneself through the difficulties of life. Recognition of importance of societal, thus structural, factors as potentially enabling and constraining factors. Antonovsky^5191 defines SOC as “a global orientation that expresses the extent to which one has a pervasive, enduring though dynamic feeling of confidence that: 1) the stimuli deriving from one’s internal and external environments in the course of living are structured, predictable, and explicable; 2) the resources are available to one to meet the demands posed by these stimuli; and 3) these demands are challenges, worthy of investment and engagement”.
	Ketola et al^Citation34 (2014)	The SOC thus has three main components: i) the ability to understand what is happening (cognitive component); ii) the manageability of life situations in social networks (manageability component); and iii) the ability to find a meaning in life (meaningfulness component).
Positive experiences	Manchaiah et al^Citation30 (2015) Pyykko et al^Citation35 (2014)	Positive psychology:^Citation41 A branch of psychology which aims to understand and enhance human strengths (eg, personal traits, creativity, joy, flow, responsibility, optimal performance, and achievement). It is the scientific study of what makes life worth living and “happiness”. In a health/illness context, focus lies on exploring how people in general and persons with chronic or mental health illness can become happier, more resilient, and more fulfilled. Identifying perceived positive experiences provides an important empirical starting point.

Table 3 Summary of self-help approaches for Ménière’s disease

Self-help approach	Illustrative elements/dimensions	Comments
Stress-related coping strategies	Escape from or avoidance of a trigger or other stressful situation. Attempts to self-control one’s thinking and reactions and control or regulate one’s feelings and actions. Distancing oneself or reducing the significance of the situation or event and/or modifying one’s attitude, through redefining the situation’s importance. Accepting responsibility for one’s own role in the situation and trying to make things better, for example, in relation to their reactions to the situation or responses triggered.	Individuals report their use of such strategies to enhance symptom control (SC) and general coping with MD
Cognitive behavioral therapy (CBT)	Access and use a web-based information, guidance, and support package centered on either CBT or SC (based on applied relaxation), or both in combination, or at different times/occasions. Using the selected approach (CBT/SC) as a routine or when necessary for reinforcement.	Health care practitioner-designed packages, but aimed for self-use, and incorporation to aid or enhance SC/reduction in symptom severity and thus coping with MD
Self-identification: “finding your own way”	Trying out multiple approaches for helpful treatments, ways to manage symptoms, and better cope with the condition. Drawing and building on support and advice from significant others (such as a partner, family members, or friends) and also health care practitioners. Finding a combination of treatments (biomedical, CAM, other coping strategies) and using these to optimize “my coping with my Ménière’s disease”. Increasing and developing a better and deeper understanding of their MD and mind-body interplay. Modifying and improving one’s lifestyle (diet, exercise, sleep, etc). Adopting a more positive approach. This can be through modifying their values, forgetting/accepting problems (eg, limitations on mobility or social interaction - learning to live along with it [the condition]”) Avoidance of precipitating factors (such as work/home stress or rapid head movements).	Individualized, self-identified Self/health agency Regaining control and empowerment
Sense of coherence (SOC)	Drawing on the person’s SOC and self-resiliency to cope with the stresses brought on by MD in turn cope better with the impacts, within their own lifeworld. Drawing on significant others support.	For SOC to be a self-help strategy per se, emphasis needs to lie on ways to develop and enhance a person’s SOC within his or her own socio-economic lifeworld. This is a critical area for further research
(Building on) positive experiences	Personal development (eg, valuing things one is able to do positively; becoming more accepting of limitations, enhanced understanding of MD and mind-body interaction). Greater appreciation of the positive aspects of their life (eg, developing personal strength, enhanced empathy of others with the condition or who are ill; opening up of new possibilities, for example, friendships or work situations). Drawing on the support and advice of significant others.	As with SOC, additional insight is needed on ways that “positive experiences” may arise and develop within the person’s own socio-economic lifeworld. In addition, development and use of health care support packages based on positive psychology is needed. These are important areas for future research

Figure S1 Sample search strategy – PsycINFO.

Table S1 Critical appraisal of efficacy of self-help interventions for tinnitus and vertigo

Tinnitus and vertigo: common elements in Ménière’s disease
Nyenhuis et al (2013)	Examine the efficacy of cognitive behavioral therapy (CBT) self-help interventions on tinnitus distress and value of face-to-face vs other (eg, only information, discussion forums)	Systematic review of randomized controlled trials (RCTs) No country limitation Four electronic databases (up to February 2012), contacting key authors in field and manual search using search terms of tinnitus and self-help interventions	CBT self-help intervention (standardized manual explored independently by the individual) Passive control (face-to-face treatments or online discussion forums) 10 studies included in the meta-analysis. Resulted in 1188 participants, on average 49 years old
Yardley and Beech (1998)	Examine the socio-cultural functions of accounts of coping and coping-related beliefs offered by people suffering from vertigo	Qualitative, interview-based study UK (south-east) Consecutive sample of persons, eligible and referred for a RCT of benefits of exercise therapy for vertigo	35 persons who had consulted their doctor on account of their vertigo. Vertigo patients; 25 women, 10 men, average age of 60, range 26-87
Yes, within each of the included studies in the systematic review. Overall, average of 5.2 years	CBT self-help interventions significantly reduced tinnitus distress and depressiveness in comparison with passive controls at post-treatment assessment. There was no difference between the self-help treatment or face-to-face treatment. But, the overall quality of RCTs was low in general.	This is a well designed and soundly conducted systematic and meta-analytical review of RCTs meeting the eligibility criteria and published up by February 2012. Two authors Independently examined paper relevance and the critical appraisal of included studies. High quality and appropriate statistical analysis is conducted, including a sensitivity analysis (which suggests a possible publication bias). The authors point to some study limitations, including: conceptual heterogeneity on the nature of a self-help interventions and the overall low study quality, suggesting the need for more RCTs of high quality. The authors’ conclusions (self-help interventions with little or no therapist contact are as efficacious as face-to-face treatments) fit the evidence.	++
Yes Length of time with dizziness, not stated	Two main coping strategies were mentioned by most participants: those involving the doctor (n=34; diagnosis, advice, or treatment) and physical (n=33; eg, avoiding or restricting activity, sitting/lying down, holding on to a support). The next three most prevalent accounts related to either seeing (n=28), or coping through ignoring and carrying on or asserting the need to be positive and independent (n=25), or coping by depending on others (n=24; eg, family, neighbors). Nine mentioned diet-related changes (salt, pork, and cheese), smoking, and homeopathy. The accounts and discourse used demonstrated participants’ perceptions of their having a chronic illness, being physically ill but socially responsible to attempt to find ways to cope.	A well designed and conducted qualitative study, based on a selected sample (all of whom were eligible and future participants in an RCT) and tape-recorded interview (length 20-60 minutes), following a set of pilot interviews. A sound and appropriate theoretical and inferential perspective is followed through and good evidence of the meaning and appropriateness of the content analysis of coping strategies and possible self-perceived causes of discourse. The authors’ discussion and conclusions fit the evidence presented (coping styles having a behavior and socio- linguistic component, strongly influenced by Western ideas about the body, as “misbehaving” while in contrast individuals were facing having to cope with an altered state of being).	80% ++

Notes: Graded according to relevant items in the Quality of Study Rating Form, summed and presented as % of maximum possible for set of items; graded on three-point scale, ++ high quality; + good quality; and - low quality, according to NICE quality assessment criteria.¹

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