Living with tinnitus and the healthcare journey: An interpretative phenomenological analysis

Objectives: Tinnitus is a very common experience, and although usually mild, in a significant proportion of people, it is intrusive, persistent, and disabling. This paper explores the lived experience of chronic disabling tinnitus, with the aim of understanding how distress and chronicity occur, and what might help to reduce this. Design: Nine individuals were interviewed 6 months after completing mindfulness-based cognitive therapy (MBCT) as part of a randomized controlled trial. The results reported here focus on their experiences of tinnitus before receiving MBCT. Methods: Data were collected through semi-structured, face-to-face interviews with a clinical psychologist, and an interpretative phenomenological analysis approach was used. Results: Two supraordinate themes emerged. ‘Living with tinnitus’ describes a range of significant and profound life changes that result from the condition. Tinnitus can be a life-altering condition affecting thoughts, emotions, attention, behaviour, and the social world. ‘The health care journey’ shows how chronic distress was intensified by unhelpful health communications and alleviated by helpful consultations. Conclusions: Tinnitus is a biopsychosocial condition, and associated distress is affected by cognitive, behavioural, attentional, and social factors. The individuals’ initial reactions to tinnitus interact with the responses of others, including health care professionals. The burden of tinnitus could be reduced by developing early interventions that offer clear, helpful, and realistic information about tinnitus and appropriate treatments. Statement of contribution What is already known on this subject? Tinnitus is the experience of an internal sound without an external sound source. It can be troubling, disabling, and chronic and usually has no clear medical cause or medical treatment, but psychological interventions are promising. Cognitive, behavioural, and attentional factors play a role in distress and therapeutic outcome. Clinical encounters are improved by aligning patient and clinician and sharing decision-making. What does this study add? It is the first in-depth study exploring how tinnitus distress and health care systems interact. It shows how a biopsychosocial approach to tinnitus may reduce tinnitus burden more effectively than a biomedical, diagnostic-focused approach. It indicates how effective early health care information could be used to reduce chronic tinnitus distress.