A descriptive exploration of the experiences of patients with significant functional impairment following a recent diagnosis of metastatic spinal cord compression

Aim. To explore the experiences, concerns and priorities of patients newly diagnosed with advanced malignant spinal cord compression and had significant problems with mobility at presentation. Background. The consequences of malignant spinal cord compression can be devastating. Patients and their families are under pressure to adapt quickly to the significant functional impairment that occurs while coping with a diagnosis of advanced cancer. Much of the literature has focused on diagnosis and treatment and little is known about patients’ experiences, priorities and concerns. Design. A descriptive qualitative methodology was adopted using semi-structured interviews and Framework Analysis techniques. Method. A semi-structured interview schedule was developed to explore patient’s descriptions of their experiences leading up to diagnosis and during their admission to the cancer centre along with their thoughts and feelings about their future with malignant spinal cord compression. The interviews took place after completion of radiotherapy before discharge home. Interviews were carried out between April 2009–March 2010. Findings. Ten participants were interviewed. A dual narrative was identified in which participants talked about their concerns and emphasized their ability to cope and maintain a positive outlook. Patients’ concerns and priorities were identified. Maintaining hope emerged as an important element of coping. Uncertainty was a source of hope. Conclusion. The study provides insights into the experience of malignant spinal cord compression from symptom occurrence to diagnosis and beyond. The findings highlight the importance of early discharge planning and family involvement in meeting patients’ priorities for care