The experiences of social and community participation of people with non‐traumatic spinal cord injury

Background/aim Incidence of non‐traumatic spinal cord injury in Australia is increasing, which will result in more occupational therapists being involved in the rehabilitation of this group in the future. The profile of people with non‐traumatic spinal cord injury differs from people with traumatically acquired spinal cord injuries, and their long‐term health and well‐being outcomes are not known. The aim of this study was to explore the experience of returning to social and community participation following non‐traumatic spinal cord injury. Methods Qualitative methods were used for this study. Semi‐structured interviews were conducted with seventeen people with non‐traumatic spinal cord injury who had returned home. Data were analysed inductively utilising the thematic analysis method. Results The process of returning to social and community participation following non‐traumatic spinal cord injury was identified as occurring in three main stages: withdrawal; re‐emergence into society; and stability. Each stage consisted of adjustment and adaptation in a number of areas, including: the loss of independence; the experience of being out in public; social networks; participation in productivity roles; and expectations regarding satisfactory social and community participation. Many of the participants had developed or were developing strategies to adapt to the changes experienced in these stages. Conclusion By using a qualitative approach, this study adds to the understanding of the adjustment process experienced by people following non‐traumatic spinal cord injury when they return to living in the community. Although findings parallel those of studies conducted with people with TSCI, there are some differences that may warrant alternative approaches from occupational therapists working with people with NTSCI. Such approaches include assisting people with NTSCI to modify their expectations regarding how they will participate in the community, assisting them to find new meaningful roles, and facilitating the development of new social networks to replace lost ones.