Knowledge, perceptions, and beliefs about urinary tract infections in persons with neurogenic bladder and impacts on interventions to promote person-centered care.

STUDY DESIGN: Qualitative study.

OBJECTIVES: To explore how knowledge, perceptions, and beliefs about urinary tract infections (UTIs) among persons with neurogenic bladder (NB) may impact health behaviors and provider management and enhance person-centeredness of interventions to improve UTI management.

SETTING: Three Veterans Affairs (VA) medical centers.

METHODS: Adults with NB due to spinal cord injury/disorder (SCI/D) or multiple sclerosis (MS) with UTI diagnoses in the prior year participated in focus groups. Transcripts were coded using deductive codes linked to the Health Belief Model and inductive codes informed by grounded theory.

RESULTS: Twenty-three Veterans (SCI/D, 78%; MS: 18.5%) participated in discussions. Three themes emerged: (1) UTI knowledge; (2) factors affecting the intervention environment; and (3) factors affecting modes of delivery. Knowledge gaps included UTI prevention, specific symptoms most indicative of UTI, and antibiotic side effects. Poor perceptions of providers lacking knowledge about NB and ineffective patient-provider communication were common in the Emergency Department and non-VA facilities, whereas participants had positive perceptions of home-based care. Participants perceived lower severity and frequency of antibiotic risks compared to UTI risks. Participant preferences for education included caregiver involvement, verbal and written materials, and diverse settings like peer groups.

CONCLUSIONS: Identifying patient perspectives enhances person-centeredness and allows for novel interventions improving patient knowledge and behaviors about UTIs. Partnering with trusted providers and home-based caregivers and improving NB knowledge and communication in certain care settings were important. Patient education should address mental risk representations and incorporate preferences for content delivery to optimize self-efficacy and strengthen cues to action.