If They Care About You, You Get Better Results: A Qualitative Analysis

Objectives: Many studies have documented a lower prevalence of urinary incontinence (UI) and UI care-seeking among women who identify as African-American or Black as compared to their White counterparts. We sought to understand the experiences of women in City X who identify as African-American or Black regarding UI and UI care-seeking.

Methods: Women in City X with UI who self-identified as African-American or Black were recruited to participate in qualitative interviews or focus groups through outreach in community locations and word of mouth. Focus groups and individual interviews were led by a trained facilitator from the community and followed an open-ended script covering topics related to UI beliefs, symptoms, self-management, coping behaviors, and care-seeking experiences. Audio recordings were transcribed verbatim, and 2 independent reviewers (KW & TJ) identified emergent themes using inductive analysis, with weekly discussion to resolve coding discrepancies, using NVivo. This abstract focuses on themes related to UI care-seeking.

Results: A total of 30 women with UI participated in five focus groups (N=29) of 4-8 women each and 1 individual interview (conducted virtually). Thematic saturation was reached by the fourth focus group and focus groups 5 and 6 were confirmatory. Mean age was 66.1±12.5 years and most women had completed some college or more (70%). The mean Sandvik Severity Index (SSI) score was 4.9 ± 3.5, corresponding with moderate severity and 40% of women had previously sought care.
We identified three major categories of barriers to UI care-seeking: personal or cultural experiences, systemic barriers, and provider-related factors, with specific themes within each outlined in Tables 1 and 2. Emergent subthemes for personal or cultural barriers to discussing UI were self-blame, a culture of silence, embarrassment/shame, lack of knowledge and normalization. Patient’s identified limited trust in quality of care received and concerns about provider age, gender, race, and credentials as provider-related barriers to discussing UI with a healthcare provider. Systemic barriers to discussing UI with a healthcare provider included cost of care and racism leading to differences in treatment, and racism and sexism creating pressure for patients to advocate for themselves. Participants cited these concerns as strong motivators for seeking Black and female healthcare professionals and placed high value on sociocultural competence.

Conclusions: Participants in this sample of community-dwelling African American women with UI in City X shared many barriers to UI care-seeking that have been previously described in other samples, but endorsed unique racism-related factors that may contribute to lower rates of UI care-seeking and treatment. It is imperative that both individual providers and healthcare systems improve their delivery of culturally-responsive care for UI and other conditions that disproportionately impact older women, including recruitment of culturally concordant providers throughout healthcare systems.