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

Jasmine Heath Hearn,Sen Selvarajah,Julian Taylor,Paul Kennedy

doi:10.1038/s41394-018-0042-2

Abstract

Study designQualitative, phenomenological design.ObjectivesNeurogenic 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).SettingCommunity sample, United Kingdom.MethodsTwelve 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.ResultsInterview 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.ConclusionsThese 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.

Highlights

Deceased: Paul Kennedy.Each year in the United Kingdom, around 1,200 people are diagnosed with a spinal cord injury (SCI) [1], of which bladder dysfunction and urinary tract infection (UTI) are common secondary consequences [2]
These challenges emerged in three super-ordinate themes: (1) Symptom Management Precedence, (2) StigmaMotivated Risk Management and (3) Exhaustive Exploration of Treatment Options, which serve to highlight the extremities of symptoms experienced, the impact of UTIs on social participation and identity, and the desperation with which people with SCI seek alternative options for UTI management
The present study suggests that improved management of symptoms and the reduction of stigma around UTIs, and being a wheelchair user could improve social participation and wellbeing

Summary

Introduction

Each year in the United Kingdom, around 1,200 people are diagnosed with a spinal cord injury (SCI) [1], of which bladder dysfunction and urinary tract infection (UTI) are common secondary consequences [2]. Following SCI, the bladder may not empty efficiently or at all, leading to either over-filling or urinary incontinence (which can be triggered by spasticity). This can lead to high bladder pressure voiding, stones in the urinary tract and vesicoureteral reflux [4]. Neurogenic bladder dysfunction can be managed with either timed voiding (using the toilet at regular intervals), intermittent catheterization (4–8 times a day), or with indwelling urethral or suprapubic catheter [4]

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