The Experience of Spinal Cord Injury: The Individual's Perspective—Implications for Rehabilitation Practice

BACKGROUND AND PURPOSE: Research in rehabilitation has been focused primarily on provision of care issues and treatment intervention outcome measures. The input of the clients involved has not been solicited in a systematic way. As a physical therapist practicing in rehabilitation, the researcher became increasingly aware of a discrepancy between the perception of spinal cord injury and its consequences held by health professionals and those people who experience the injury over many years. It was recognition of this discrepancy that formed the background from which this study evolved. The purpose of this qualitative research study was to explore individual conceptions of the experience of spinal cord injury from the perspective of adult learning. SUBJECTS AND METHODS: Semistructured, in-depth interviews were conducted with 10 individuals who had sustained a traumatic spinal cord injury 3 to 5 years prior to the interview. Questions asked were nondirective and designed to trigger accounts of meaningful aspects of the subjects' disability experience since their injury. Data analysis entailed several thorough readings of the interview transcripts from which three categories of meaning developed and for which criteria were established. RESULTS: The categories of meaning--rediscovery of self, redefining disability, and establishing a new identity--represented commonalities of conceptions of the spinal cord injury and the resulting disability experience. The continuity of "self" was of primary importance to the ongoing experience of disability, and the learning involved was diverse and intensely personal. Strategies used by the subjects in achieving these categories are discussed. CONCLUSION AND DISCUSSION: Although the contribution of the rehabilitation instruction, and particularly that of individual health care professionals, was acknowledged by the subjects, the adequacy of the preparation of clinicians for their role as adult educators in the rehabilitation process is questioned. A theory of transformative learning is introduced as a possible explanatory model for the study findings, application of which may facilitate a more client-centered approach to rehabilitation practice.