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

Abstract

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, speci c symptoms most indicative of UTI, and antibiotic side effects. Poor perceptions of providers lacking knowledge about NB and ineffective patientprovider 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 homebased 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-e cacy and strengthen cues to action. Microsoft Teams. The Institutional Review Board at the Edward Hines, Jr. VA Hospital approved this study (IRB Reference # 1433668-1). Research team Focus group discussions were led by the Principal Investigator (PI; MF), an Infectious Diseases (ID) physician with training in Health Services Research (HSR). The PI did not provide clinical care to study participants. Two team members with training in Public Health and HSR assisted with data collection, analysis, and interpretation (MW, PS). There was a diversity of perspectives and training among the broader research team, which included MD, PhD, and PharmD researchers with experience in ID, Rehabilitation Medicine, HSR, and Implementation Science. Study DesignFocus group participants were Veterans with NB due to SCI/D or MS who had in-person encounters with a UTI diagnosis between 2017-2018 at three VA Medical Centers (VAMC). Two VAMCs have SCI/D Centers ('Hubs') that are referral centers for large geographic areas and provide acute rehabilitation and life-long follow-up care, while the third is a 'Spoke' site where providers work with coordinating Hub facilities to provide comprehensive primary and specialized care. All three VA...