The lived experience of Cauda Equina Syndrome: a qualitative analysis

Study design: An exploratory qualitative analysis, using semi-structured interviews to investigate the lived experience of Cauda Equina Syndrome (CES). Objectives: To address the paucity of psychological research into CES and explore patient experiences of living with the injury. Setting: The study was conducted in the United Kingdom. Recruitment was via two National Health Service spinal services in the South East of England and an online CES charity. Methods: An interpretative phenomenological analysis (IPA) methodology was employed. Eleven participants took part in the study and completed an interview consisting of seven open ended questions relating to the psychosocial impact of CES. Interviews were audio-recorded, transcribed verbatim and analysed following an IPA procedure. Results: Three superordinate themes were generated. The first, Dissatisfaction with care: 'I felt very abandoned', captured experiences of feeling neglected and disbelieved by the healthcare system and a wish for symptoms to be validated. The second, Hidden to others: 'Nobody knows. It's horrible', spoke to a struggle to gain a social identity in relation to a hidden disability. The third, Changing identities: 'You become someone totally totally different' versus 'You're still the same person', captured a process of renegotiating identity following CES. Conclusion: Findings highlight the importance of improving access to support for people with CES, as well as validating and facilitating disclosure of hidden symptoms. There is a clear need for more research into the psychosocial impact of this injury.