“I’ve taught my doctor well”: The lived experiences of people managing pain after spinal cord injury

Pain is a common secondary complication following spinal cord injury (SCI). Many management options fail to provide adequate relief and even exacerbate co-occurring factors in the individual’s pain experience. This study explored perceptions of internal and external resources that empower people with SCI to manage pain, and the attributes of services that best support pain management, across the whole of their lives. Thematic analysis methods were used to analyse qualitative data from exploratory, interactive face-to-face, and online interactive focus groups with six people living with SCI. The pain management experience of people with SCI was framed by an overriding narrative describing challenges in accessing pain services that supported them to live well with their pain. Five themes describe the unique pain experience and need for individualised treatments, the power of choice, a need for early intervention, timely and responsive access to support, and partnerships with and between health professionals, peers, and mentors. The experience of pain is unique to the individual and has a complex interrelationship with many aspects of the person, their life, and their environment. Therefore, pain management plans need to be unique to the person – their interests, strengths, needs, values, and resources, as well as those of their whānau/family.