Perceptions, experiences, and beliefs regarding urinary tract infections in patients with neurogenic bladder: A qualitative study

Although urinary tract infections (UTIs) are common in patients with neurogenic bladder (NB), limited data exist on UTI perceptions, experiences, and beliefs in these patients. We recruited adults with NB due to spinal cord injury/disorder (SCI/D) or multiple sclerosis (MS) at three Veterans Affairs (VA) medical centers to participate in 11 virtual focus groups. Audio transcripts were coded using a mixed approach with primary deductive codes linked to the Health Belief Model, and secondary inductive codes informed by grounded theory. Twenty-three Veterans (SCI/D, 78%; MS, 18.5%) participated between May 2021 and May 2022. Participants’ perspectives, experiences, and beliefs about UTI were reflected in three major themes: 1) influence of caregivers; 2) influence of the healthcare environment and provider characteristics; and 3) barriers and facilitators to care. Caregivers promoted care-seeking behavior, enabled in-home care, and enhanced participants’ self-efficacy to understand educational material. Participants had poor perceptions of providers who were not knowledgeable about NB or ineffectively communicated. Good relationships with providers who knew the participant well improved self-efficacy to follow provider recommendations. These results suggest that patient-centered interventions to improve UTI management in this population should expand caregiver involvement, enhance patient-provider communication, and target provider types and care settings that lack familiarity with NB.