Quality of life among people with high spinal cord injury living in the community.

摘要

STUDY DESIGN: An exploratory, qualitative methodology. OBJECTIVES: To explore perceptions of quality of life (QOL) among community-dwelling people with high spinal cord injuries (SCI) and the factors they identified as contributing to, enabling or constraining the quality of their lives. SETTING: Urban communities on Vancouver Island and in the lower mainland of British Columbia, Canada. METHODS: Semi-structured interviews with both men (n=11) and women (n=4) with complete high SCI (C1-C4). Interpretive analysis was grounded in the themes that arose from the interview transcripts. RESULTS: Time since injury ranged from 4 to 28 years. The mean current age was 35 years, with a range from 21 to 50 years of age. High SCI disrupted not just a body but an entire biography of plans, daily activities and valued occupations. Initially feeling helpless and useless, the participants were unanimously glad to be alive at the time of the study and several described perceptions of very high QOL. The themes which emerged from the data were over-lapping and inter-dependent and described a process of refocusing values and re-establishing a view of the self as able and valuable following injury. The three primary themes addressed issues of autonomy, the meaningful use of time, and relationships. CONCLUSIONS: The study findings suggest that life with a high SCI can be rich and fulfilling if society is prepared to enable and support this; and that QOL outcomes might be maximized by adopting a biographical orientation to the rehabilitation process. SPONSORSHIP: This research was funded by a University of British Columbia Graduate Fellowship, a studentship from the Rick Hansen Man in Motion Foundation and a doctoral fellowship from the Social Sciences and Humanities Research Council of Canada.