A Qualitative Study of Community Dwelling Black Women’s Experiences with Urinary Incontinence

Objectives: Urinary incontinence (UI) is a common issue impacting more than 50% of Black women. Nearly 75% of Black women do not seek care for this condition. There is a paucity of studies exploring barriers to care seeking and perspectives of individual community-dwelling Black women with UI. We carried out this qualitative study to explore Black women’s experiences, concerns, decisions, and challenges of seeking care for UI.

Methods: We performed semi-structured interviews via video with adult participants who self-identify as Black women and had symptoms of UI. We explored their experiences of UI symptoms and perceived impact on quality of life. We also asked about care seeking behaviors, treatments attempted, and any challenges to seeking care for UI. Audio recordings were transcribed and coded using an inductively-developed codebook. An ongoing exploration of patterns and relationships between codes are used to identify categories and themes.

Results: We interviewed 24 Black women with urinary incontinence, age 19 – 73 years. Half of the women had some college education and the other half had degrees ranging from associate to graduate. We have identified five preliminary themes: participants described 1) feelings of embarrassment and a pattern of adapting their routines to hide or accommodate UI; 2) lack of care-seeking being due to either embarrassment or lack of consideration of UI as a serious health issue; 3) prior bad experiences with healthcare providers not believing or taking their concerns regarding UI and other medical symptoms seriously; 4) a desire for more routine assessment for UI and greater access to educational materials on UI and potential treatments; 5) clinicians who create a positive and trusting relationship would facilitate comfort discussing UI.

Conclusions: In addition to commonly experienced embarrassment regarding UI, Black women's challenges to seeking UI care include prior experiences of race bias and feelings that their concerns were not addressed by providers. Suggestions to enhance UI awareness and perform routine assessments as well as provider training to foster patient trust and positive patient-provider relationships could improve Black women's experiences and willingness to seek UI care.