Abstract
Chronic Pain (CP) following Spinal Cord Injury (SCI) (CP-post-SCI) was found to be a distressing combination, with CP adding to the disabling effects of SCI and being one of the hardest aspects to manage due to its relentless, unpredictable and uncontrollable nature. Current literature in CP post-SCI is predominantly from a biomedical model focusing on causality and cure and in a hospital setting. Few studies have explored the lived experience of this phenomenon. The current research addresses these gaps by researching the experience of 8 people who have CP post-SCI between 4 to 47 years. Semi-structured interviews focused on the experience of CP post-SCI. The transcribed interview data, analysed using Thematic Analysis (TA), revealed four themes on living with CP post-SCI: consequences on all aspects of life; not coping; reaching the last resort; and coping. The key findings are: the traumatic nature of SCI; the experience of having a double burden; CP is considered harder to live with than SCI; a sense of feeling let down by the medical profession; and little awareness of how psychological interventions may help. The results are linked to CP theory and sociocultural factors, including disability studies, showing the impact of discrimination and inaccessibility on CP intensity. There was a lack of understanding about psychological interventions despite them being used successfully in general CP; with suicide being considered before psychological interventions. There was a lack of psychological support for CP post-SCI in the community. The findings highlight the need for psychological education for people with CP post-SCI and professionals working with them, and for a range of psychological interventions. Limitations of the research and further research are considered.