“I will try anything” the experience of working age stroke survivors living with chronic post-stroke pain: an interpretative phenomenological analysis

Purpose: To investigate the experience of working age adults living with chronic post-stroke pain in the United Kingdom (UK). Methods: Semi-structured interviews were conducted with eight working age (46–64 years) UK-based stroke survivors who experience chronic post-stroke pain (≥3 months). The interviews were analysed using interpretative phenomenological analysis. Results: The analysis led to three Group Experiential Themes: “The Solitude of the Pain Experience,” “Unsatisfactory Healthcare and the Need for Self-Care” and “The Development of Pain Acceptance.” Findings suggest that individuals see their post-stroke pain as an invisible disability, which is overlooked and misunderstood by others. Furthermore, in the absence of a differential post-stroke pain diagnosis, clear, accurate information and alternatives to pharmacological treatments, individuals with post-stroke pain invest their own resources in finding answers and a way to live with the pain. Conclusions: The findings suggest the need for further education on post-stroke pain for healthcare professionals, the consideration of pain in post-stroke assessments, the need for clear differential pain diagnoses and the provision of accurate information to patients. Research is needed to establish non-pharmacological evidence-based treatment approaches, such as pain management programmes, peer support and psychological interventions.