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Talewar K.1, Cassidy E.2, Mcintyre A.2
1Barts Health NHS trust, Therapies, London, United Kingdom, 2Brunel University, Health Sciences, London, United Kingdom
Background: Meniere's disease (MD) is a distressing long-term vestibular disorder which typically presents with episodes of vertigo, tinnitus, hearing loss and aural fullness. Symptoms severely disrupt everyday activity, and may profoundly affect psychological health and well-being. Few qualitative studies have explored how individuals make sense of, and manage, MD in the contexts of their everyday lives. No studies have explored the meaning of physical therapy for people living with this condition.
Purpose: To explore the meaning of MD from the perspective of individuals living with this condition. To understand participants' experiences of healthcare and physical therapy.
Methods: Four women with MD participated in face-to-face semi-structured interviews. Accounts were recorded and transcribed, then analysed using an iterative and layered process integral to Interpretative Phenomenological Analysis.
Results: Three of the over-arching themes constructed from the analysis are presented.
Radical Embodiment conveys participants perceptions of their previously reliable, comfortably familiar body as transforming into an embarrassing and disruptive parody of itself. The psychological impact of each attack was long-lasting, and the distrust of the body endured. All participants described a profound fear of losing control in a future attack. This fear cast a shadow over their day-to-day lives.
Re-positioning the self in the world reveals the inner struggles wrought by living with MD on the sense of self. All participants described retreating from the world in the early stages of living with MD, and of renegotiating more manageable relationships with others over time. MD retained an unwelcome salience in everyday life, and yet participants continued to work on preserving a familiar sense of self, to undertake valued activities, and to sustain significant relationships. Talking to others living with MD was regarded as providing invaluable support by all participants.
Rebuilding confidence and overcoming fear describes participants experiences and expectations of healthcare and physical therapy. Physical therapists were perceived as helpful if they offered hope about the possibility of managing MD, and practical advice about living with MD. Not all participants were offered physical therapy, and some were put off by the fear of exercise provoking an attack. Physical therapists were highly regarded if they offered face-to-face support through the most frightening phases of vestibular rehabilitation.
Conclusion(s): These findings deepened the understanding of the meaning of MD, and the psychological impact of MD on everyday life, and offered new insights about the experiences of physical therapy. Participants lives were, for the most part described as being overshadowed by the impact of MD, and the fear of triggering an attack. All participants regretted not being able to live a fuller life. However, all participants had, over time and with little specialist support, developed their own expertise in managing their lives, enabling their participation in the world. Physical therapy offered a positive means by which participants could learn to manage their symptoms.
Implications: This study has shed light on meaningful and new perspectives for healthcare professionals. The insights derived from the analysis are context-dependent and should be evaluated in relation to existing professional and experiential knowledge.
Funding acknowledgements: ACPIVR (Association of Chartered Physiotherapists Interested in Vestibular Rehabilitation) Research Grant (2015).
Topic: Disability & rehabilitation
Ethics approval: The study was approved by the Department of Clinical Sciences Research Ethics Committee, Brunel University London.
All authors, affiliations and abstracts have been published as submitted.
