Exploring quality of life following high spinal cord injury: a review and critique

Study design: Review. Objectives: To explore the concept of quality of life (QOL), critique the practice and problems of assessing QOL following spinal cord injury ( SCI) and to review the findings of studies into QOL for people with SCI both below and above the level of C4. Methods: Relevant articles were identified from the Medline and CINAHL databases for approximately the period 1990 - 2003, cross-indexing 'spinal cord injury' or 'quadriplegia/ tetraplegia' with 'quality of life', 'life satisfaction', 'social adjustment' or 'psychological adaptation'. This search was augmented through papers identified in reference lists. Articles were excluded if they were designed solely to examine the impact of a specific intervention upon QOL; or if they examined satisfaction with various life domains without explicitly linking these to perceptions of QOL. Papers were also accessed that addressed the philosophical and epistemological issues involved in QOL conceptions and assessment. Results: Review of the literature highlights the philosophical and methodological difficulties associated with the quantitative measurement of a qualitative experience; and with the assessment of life domains chosen by researchers. Analysis of QOL research undertaken among people with all levels of SCI demonstrates that dissatisfaction with life following injury arises primarily from social disadvantage. However, little research has been conducted specifically to ascertain perceptions of QOL among people with high SCI. Conclusions: Ensuring the relevance of future research into QOL following high SCI requires qualitative methodology and mixed methods. Further research is needed to determine how rehabilitation professionals can act on the findings of their QOL assessments and enhance the QOL experienced by people with spinal cord injury in the context of their environments.