A qualitative study of traumatic cauda equina syndrome

PURPOSE: To describe the range of symptoms experienced over time following traumatic cauda equina syndrome (CES), the participants' attitudes towards their diagnosis, and to describe how participants managed their bowel and bladder symptoms. MATERIALS AND METHODS: Participants were recruited through the Victorian State Trauma Registry. Seven semi-structured interviews were conducted with convenience sampling of participants. Data were thematically analysed using a framework approach. RESULTS: Five main themes were identified: (1) information and communication about traumatic CES, (2) psychological wellbeing in living with a traumatic CES, (3) new physical reality of living with a traumatic CES, (4) realisation of the need to gain independence with bowel and bladder management and (5) adaptation of learning for their body, needs and lifestyle. This study revealed that the majority of participants could not recall the terminology of their injury or receiving information about their prognosis, creating great uncertainty. Most participants independently managed their symptoms however, there was a belief that one must live with their symptoms. CONCLUSIONS: Timely provision of information is needed. Whilst participants adapted to their new physical reality, symptom management was not optimised. For clinicians, an awareness of the ongoing effects of this injury is also important.