부산대학교 도서관

Aim and objectives: This study aimed to explore individuals' experiences of being diagnosed and living with trigeminal neuralgia (TN). Further, it sought to investigate how individuals experience and use medication for pain management and the factors which shape and influence their decision-making about surgical procedures. Background: TN is a rare neurological disorder that causes episodes of intense unilateral facial pain which is so debilitating that it is sometimes referred to as the 'suicide disease'. Clinicians often struggle to diagnose TN and its treatment using anticonvulsant medication and surgical procedures is both complex and challenging. While there is a growing body of clinical research, limited attention has been paid to the perspectives and experiences of individuals who have this condition and how they might be better supported. Methods: This study employed a qualitative, exploratory design. In-depth, semi-structured interviews were conducted with participants with TN (n=25) recruited via an online advertisement. Interviews were audio-recorded, transcribed and analysed thematically. Findings: Participants experienced considerable uncertainty and turbulence during the period prior to diagnosis. Many reported struggling to receive recognition of their pain and feeling dismissed and delegitimised by medical practitioners. Therefore, participants described making considerable effort to achieve a diagnosis, which involved engaging in instances of 'pre-diagnostic work'. This included actively resisting what they felt to be inappropriate labels for their pain, accessing information and pushing to see specialists or to undergo further medical testing. As a result, many discussed feeling they had directly contributed to their own diagnosis which had been 'hard-earned'. Often, however, rather than resolving their pre-diagnostic uncertainty, a TN diagnosis raised additional questions for participants. Most participants also detailed widespread disruption to their daily lives after diagnosis, both as a direct consequence of their pain, as well as resulting from their fear of engaging in activities which might trigger an attack. Many spoke of profound disruption to daily activities, such as eating, drinking, speaking, personal hygiene measures and general daily functioning. These challenges, in turn, frequently resulted in disruption to participants' previously valued roles and relationships, causing them considerable distress and impacting negatively upon their sense of self. Participants also described extensive disruption resulting from their treatment, which in some instances was portrayed as being almost as troublesome as their TN. Many outlined the ways in which they attempted to manage these disruptive effects upon their lives; for example, by adjusting their medication. Finally, participants discussed their contemplation of surgical interventions and their accounts suggested various personal contextual factors, such age and family circumstances, which shaped and influenced their considerations of, and willingness to undergo, such procedures. Conclusion: Participants' accounts suggest that the needs of those affected by TN are often only poorly met from diagnosis to treatment. To provide patient-centred care, clinicians must therefore listen to, and learn from, those affected by the condition, as well as recognising the considerable uncertainty and disruption many face. Care must be taken to provide those affected with appropriate information and to tailor pharmacological and surgical treatment options to individuals' unique needs and circumstances.