Neurogenic Bowel After Spinal Cord Injury From the Perspective of Support Providers: A Phenomenological Study

Abstract

Individuals with SCI often require emotional, logistical, and/or physical assistance to complete bowel care. Exploration of neurogenic bowel care from the perspective of support providers identified concerns and challenges, sources of satisfaction, and important traits and characteristics of support providers. This information can facilitate the identification of effective support providers and the provision of enhanced training and support. Interventions of this nature can improve the experience for individuals with SCI and their supports.

Creation and validation of a new tool for the monitoring efficacy of neurogenic bowel dysfunction treatment on response: the MENTOR tool

“…SCI is a long-term condition, and bowel management strategies are complex and multi-factorial [13,17]. The case for bowel management being a crucial target in chronic SCI to optimise patient satisfaction and prevent avoidable hospitalisations is clear [4,14]. The absence of a standard monitoring instrument and reliance on the individual expertise of a clinician increases the variability of bowel care.…”

“…The commonest symptoms are constipation and faecal incontinence (FI) [1,2]. Symptoms of NBD affect the majority of individuals with spinal cord injury (SCI), multiple sclerosis (MS), spina bifida (SB) and cauda equina syndrome with a prevalence of up to 80% depending on the underlying disorder [3][4][5]. The pathology arises from disturbed neural function affecting both whole gut transit, but also sensory and motor aspects of bowel evacuation [6][7][8].…”

Experience of Nurses Caring for Patients With Neurogenic Bowel Dysfunction

“…The first six months of injury are crucial to develop good bowel routines and use of physical techniques are relied upon but are a challenging time of newly injured patients (12). Burns et al (9) interviewed support workers and spouses who provide bowel care to SCI individuals around their views and experiences. These interviews showed similar findings to research in the nursing population, training remained a prevalent issue with support workers in fear of causing damage and feeling unprepared.…”

Social activity and relationship changes experienced by people with bowel and bladder dysfunction following spinal cord injury

“…Consistent with other studies, participants felt stress and anxiety about the risk of uncontrolled bowel motions and bladder accidents 12 and wanted to keep information about the issue personal. 23 Concern about incontinence impeded social activities outside the home 17,24 and any episode that did occur incited further stress, and added to feelings of embarrassment and vulnerability. Further, most participants did not want to alter social relationships by asking family or friends for assistance with toileting, emptying bladder management systems, or changing clothes, which limited the times for, and types and places of, social activities.…”