Quality of life after spinal cord injury: a qualitative interview-based study

STUDY DESIGN: Qualitative, descriptive study of audio recorded, transcribed and analyzed data, based on individual semi-structured interviews using an interview guide. OBJECTIVES: To describe the subjective experience and quality of life (QoL) of individuals with spinal cord injury (SCI) and identify elements of importance in determining QoL. SETTING: Swedish outpatient clinic. METHODS: Individuals with SCI were recruited from a specialized SCI outpatient clinic, with eligibility limited to those who had attended at least one prior clinical follow-up. No interventions were applied. Data were collected through qualitative interviews, and the primary outcome measure was the identification of key themes influencing QoL following SCI, as perceived and reported by participants. RESULTS: The interviews identified several key factors with perceived impact on the subjects' QoL including difficulties in managing everyday life, the desire to live an independent life, the significance of community and a sense of belonging, current life situation in relation to others and past experiences, and dealing with physical problems, and in particular pain, related to SCI. CONCLUSION: Participants highlighted independence, social connections, and managing SCI- related physical issues as crucial for their quality of life. They emphasized the community's role in helping individuals with SCI, live meaningful lives and pursue personal goals and aspirations.