Stigma and self-management: an Interpretative Phenomenological Analysis of the impact of chronic recurrent urinary tract infections after spinal cord injury

STUDY DESIGN: Qualitative, phenomenological design. OBJECTIVES: Neurogenic bladder dysfunction and urinary tract infection (UTI) are common secondary consequences to neurological damage to the spinal cord. This study sought to establish the impact of chronic, recurrent UTIs on people with spinal cord injury (SCI). SETTING: Community sample, United Kingdom. METHODS: Twelve participants with SCI, aged between 28 and 68 years, who had experienced at least three recurrent UTI events within the previous 12 months were recruited. Detailed qualitative information was obtained from semi-structured interviews, which lasted between 30 and 60 min. Interpretative Phenomenological Analysis was performed to explore the lived experience of UTIs. RESULTS: Interview findings identified a range of factors related to the experience of recurrent UTIs in people with SCI. These were classified into the following themes: (1) Symptom Management Precedence, (2) Stigma-Motivated Risk Management and (3) Exhaustive Exploration of Treatment Options. Participants discussed management of acute exacerbations. Distress arose from perceptions of UTIs as potentially stigmatizing and fear of relying on antibiotics. Arising from this fear, many participants sought alternative prevention and management strategies. CONCLUSIONS: These results suggest that chronic recurrent UTIs act as major barriers to social participation, with adverse effects on quality of life of people with a neurogenic bladder after SCI. People with SCI would benefit from additional assessment of the impact of recurrent UTIs, so that healthcare professionals can address specific concerns, such as the psychosocial impact of urinary incontinence and stigmatizing views. Additional support to enhance self-management and facilitate social participation should be provided.