Patients’ constructions of disability in metastatic spinal cord compression

Abstract

Metastatic spinal cord compression (MSCC) is characterised by poor prognosis and serious physical disability. Patients have complex rehabilitation needs, but the evidence on rehabilitation is sparse. This study aimed to ascertain the constructions placed upon disability by patients with MSCC. The method consisted of a series of nine process-tracing, longitudinal case studies, involving 58 interviews with 9 patients, 6 carers and 29 staff in one National Health Service region. A context-mechanism-outcome configuration was adopted as a conceptual basis for data collection, together with a constant comparative method of data analysis. Patients’ orientation to disability incorporated two apparently inconsistent attitudes. Patients acknowledged that their situation had changed and that their future plans would need to accommodate altered circumstances. However, they also resisted the idea of themselves as disabled, wanting to retain an image of themselves as resourceful and resilient. Patients used a number of strategies to reconcile the tension between these two positions. The illusions incorporated into the ‘failure to acknowledge’ pole of this orientation are self-protective and, like other positive illusions, have psychological benefits. Providing effective and acceptable support to patients living with disability relies on professional responses that are able to sustain patients’ sense of their own competence.