Abstract
Background and purpose: Understanding how people living with tetraplegia experience rehabilitation can help establish how those individuals make sense of their social realities during rehabilitation, and whether services are orientated to their needs and concerns. The present study explored the experience of rehabilitation from the perspective of those living with tetraplegia to better understand how they made sense of rehabilitation, and to what extent rehabilitation services were perceived to have prepared them for living with a SCI.
Methodology: Semi-structured interviews of between 40 – 60 minutes duration were conducted with three men and one woman, with injuries at C7 (the seventh vertebra down from the skull) or higher, within six months of discharge from inpatient spinal injury rehabilitation. These interviews were recorded, transcribed and subject to Interpretative Phenomenological Analysis (IPA).
Results: Participants described their SCIs as more than a biological impairment that limited certain functional abilities; SCI was a sudden event that was experienced as a significant disruption to one’s life biography. Three key themes captured areas that participants perceived to be necessary in helping to restore feelings of agency and biographical continuity. The importance of information referred to participants’ need to understand the consequences of what had happened. Regaining control explained the need to gain a sense of control over the new and unfamiliar world of living with the consequences of tetraplegia. Restoring a sense of personal narrative encapsulated the importance of addressing wider existential issues such as continuity of identity. Participants described how the rehabilitation provided by the Burwood Spinal Unit (BSU) facilitated control and also occasions where aspects of rehabilitation service provision inhibited their control over their lives. In particular, the transition home, relationships, and connecting the changed physical self with the psychological self were identified as crucial to restoring biographical continuity.
Discussion: These findings support a growing body of international literature whose authors argue that rehabilitation needs to expand beyond medically founded, functional based service delivery to focus more on the existential disruption caused by SCI in order to support living with tetraplegia. One potential way of achieving this in the clinical environment, identified by participants in the study, was an increased use of peer mentors to provide first-hand information on practical issues as well as positive examples of living with a SCI.