Gaps exist in the literature related to the lived experiences of women with urinary incontinence (UI) in low- and middle-income countries (LMICs) and particularly in sub-Saharan Africa (SSA)[1]. The aim of this study is to understand these experiences through the lens of women and the clinicians involved in their care to inform effective, accessible, and patient-centered education and treatment and document the need for such treatment.

The primary qualitative component of this research included in-depth interviews and focus group discussions, using semi-structured interview guides to collect information from women with UI, clinicians engaged in women’s healthcare, and other key stakeholders. This included inquiring about the broader healthcare environment, the existing context of UI care, management, and treatment options in LMICs, and digital health as related to general health, women’s reproductive health, and UI. Secondarily, quantitative data collection included online questionnaires that incorporated standardized UI-specific survey questions, in addition to information about UI management. These were administered to in-person participants, as well as to women who self-identified as having UI through various online platforms. This mixed-methods approach was rooted in human-centered design (HCD). The HCD approach promotes the idea that the needs of the end-user(s) are central to conceptualization, design and implementation of healthcare systems and interventions.
Research was conducted in Lagos, Nigeria and Nairobi, Kenya. Participants included women 18-65 years old with stress, urgency, or mixed UI (screened using 3-Incontinence Questions (3IQ) survey)[2], ambulatory, could speak English or Swahili, and had a phone for personal use (may be a shared phone). Healthcare worker (HCW) participants were those engaged in women’s health service provision and included physicians, nurses, and physiotherapists. Recruitment occurred through local healthcare professionals, local health facilities, and online. Data collection occurred August – September 2023.

A total of 175 women and HCWs participated: 88 women with UI (37 Nigerian women and 51 Kenyan women; Figure 1) and 87 HCWs (29 Nigerian HCWs and 58 Kenyan HCWs), including urologists, gynecologists, nurses, and physiotherapists.
In both countries, several factors influence a woman’s decision-making on whether to seek healthcare services (Figure 2). These are represented within three thematic areas (1) health literacy (e.g., health awareness, access to information, perception of severity of the health condition), (2) cultural and religious beliefs (e.g., peer influences, cultural & religious norms, stigma, likelihood of health issues interfering with a woman’s social and work life), and (3) healthcare system interactions (e.g., lived and shared experiences from previous healthcare system interactions, cost). Women are embracing digital health, particularly telemedicine and digital pharmacy platforms, because of their convenience and assurance of privacy. As availability of these digital services expands, it is reasonable to consider their growing influence on women’s healthcare decisions and care-seeking behaviors.
Key findings specific to UI include:
•	Women with incontinence are bothered by their symptoms and desire education, treatment, and dismantling of the stigma associated with UI.
•	Lack of awareness of UI as a health condition is pervasive and is a major contributor to extremely low care-seeking behaviors.
•	Healthcare workers identified data gaps, including the need for high quality prevalence studies and to develop separate guidelines and policy for fistulous and non-fistulous incontinence.
•	Both healthcare workers and women with incontinence are eager for innovation, education, and policy changes to set the path for capacity-building in pelvic floor disorders management in Kenya and Nigeria.

This research underscores the pervasive and bothersome nature of UI among women in SSA. While the prevalence of UI is high, low health-seeking behaviors are exhibited by affected women. This stems from factors such as a lack of awareness, the normalization of UI, UI myths and misconceptions, and a broader trend of non-health-seeking behaviors within the population. In response, sensitization focused on pelvic health and UI can promote health literacy for women and within communities. Health education efforts may leverage digital platforms and existing local and international women’s health organizations to enhance impact and reach.
Cultural values related to community, belonging, and a sense of collective responsibility can serve as enablers for women to learn about UI and to seek treatment. Partnerships with social and religious institutions can further promote awareness and care-seeking and dismantle stigma and embarrassment associated with UI.
Research and training in UI management and expanding available treatment options can strengthen healthcare systems in these settings. There is strong interest amongst HCWs in UI-related research and education, as well as a desire from both HCWs and women with UI to embrace new technologies that facilitate treatment and enhance the clinician-patient relationship.

Given the prevalence and impact of UI in Kenya and Nigeria, future efforts within women’s health in SSA should include pelvic floor disorders. Key areas of need include building awareness, fostering research, and targeted healthcare capacity-building for UI and other PFDs. Digital communities and innovations in digital health hold promise for facilitating progress in all areas and should be explored, especially given the rise of the digital health ecosystem in LMICs and especially in SSA and the desire amongst women and HCWs for such solutions.

Ackah M, Ameyaw L, Salifu MG, et al. Estimated burden, and associated factors of Urinary Incontinence among Sub-Saharan African women aged 15-100 years: A systematic review and meta-analysis. PLOS Glob Public Health. 2022;2(6):e0000562. Published 2022 Jun 2. doi:10.1371/journal.pgph.0000562
Brown JS, Bradley CS, Subak LL, et al. The sensitivity and specificity of a simple test to distinguish between urge and stress urinary incontinence. Ann Intern Med. 2006;144(10):715-723. doi:10.7326/0003-4819-144-10-200605160-00005

Continence 12S (2024) 101570
DOI: 10.1016/j.cont.2024.101570