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Research and Projects

Understanding the impacts of Ménières disease in everyday life

Theme: CLAHRC - Person-Centred Care
Status: Live

Background

Ménière’s disease is an idiopathic (i.e. the cause is unknown), long-term, progressive inner ear disorder, defined by episodes of vertigo, aural fullness (pressure in the ear), tinnitus, and hearing loss. It has a prevalence of approximately 0.2% in the United Kingdom (equating to around 120,000 people), and is most commonly diagnosed between 40-60 years of age. Ménière’s is experienced as a debilitating unpredictable disease, associated with high levels of psychosocial co-morbidity and reduced quality of life amongst diagnosed individuals (as reviewed by Kirby and Yardley, 2008).

Project aims and objectives

This Ménière’s Society-funded project aimed to understand how Ménière’s disease impacts upon patient’s mental health and wellbeing, examining how people experience and adapt to Ménière’s within their everyday lives, and in the context of their whole lives. This aim was met through two complementary objectives:

  1. To identify the impacts of Ménière’s disease on patients’ mental health and wellbeing using epidemiological techniques with UK Biobank data.
  2. To use in-depth qualitative interviews to explore what it is like to live with Ménière’s disease in everyday life (including the negotiation of triggers, symptoms and relationships with others), and the ways in which the disease is believed to shape one’s experiences of mental health and wellbeing,

Research questions

  • What is the impact of Ménière’s disease on mental health and wellbeing? (Obj. 1 )
  • How does Ménière’s disease duration alter mental health and wellbeing? (Obj. 1 )
  • What is the impact of Ménière’s disease on mental health and wellbeing compared to other chronic conditions (e.g. asthma, arthritis, migraine)? (Obj. 1 )
  • What are the mechanisms by which patients attempt to deal with – both practically and psychologically – the unpredictable nature of the disease in everyday life over time? (Obj. 2)
  • What is the nature, source and value of support (social and clinical) that might be encountered? (Obj. 2)
  • What impact does living with Ménière’s disease have on a patient’s relationships with those around them? (Obj. 2)

How were the aims achieved?

A two-phase mixed methods approach has been used to examine these research questions, combining broad population-level insights with the first-hand everyday experiences of individual Ménière’s patients.

Research Questions 1-3 were addressed in Phase I (completed by Dr. Jess Tyrrell), in which epidemiological techniques were used to investigate the associations between Ménière’s disease and mental health and wellbeing in the UK Biobank

Research Questions 4-6 were addressed in Phase II (completed by Dr. Sarah Bell), in which a series of in-depth narrative interviews were conducted to gain rich insights into how and why such mental health outcomes may arise, and how diagnosed individuals seek to negotiate their everyday lives whilst managing the diverse, long-term and fluctuating symptoms of Ménière’s disease.

Outputs and further information

The project team published a Key Findings booklet in October 2015 for health professionals, patients and their family and friends.

The team have also developed a Ménière’s Monitor app. This is a free app for iPhone and Android users, which allows users to record and monitor the symptoms of their condition on a daily basis. You can find out more, and download the app from the Ménière’s Monitor website.

For more information on this project, please visit the project page on the Exeter university website.

Others Involved

Cassandra Phoenix, Jessica Tyrrell, Sarah Bell


Downloads

  • Key Findings: Living with Ménière’s disease - PDF