Experiences of Women with Incontinence and Clinicians in Nigeria and Kenya

Objectives: Research gaps exist related to the lived experiences of women with urinary incontinence(UI) in low- and-middle-income countries(LMICs) and particularly sub-Saharan Africa(SSA). The aim of this study is to understand these experiences through the lens of women and their clinicians to inform effective, accessible, and patient-centered treatment.

Methods: This mixed methods study involved in-depth interviews and focus group discussions with women with UI and clinicians engaged in women’s healthcare. Topics included the broader healthcare environment, current UI management, treatment options in LMICs, and digital health engagement. Quantitative data included online or in-person administered questionnaires about UI symptoms and management.
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 survey)[2], ambulatory, could speak English or Swahili, had a phone for personal use (may be shared). Clinician participants included physicians, nurses, and physiotherapists engaged in women’s health. Participants were recruited online and through local health facilities in August – September 2023.
All participants provided written informed consent. Interviews were conducted in private settings in person or online. This study was approved by institutional and national ethical review boards in Nigeria and Kenya.

Results: Of 175 participants, 88 women with UI(Table 1) and 87 clinicians, including urologists, gynecologists, nurses, and physiotherapists were interviewed. Factors that influence women’s healthcare decision-making are represented within three thematic areas: (1) health literacy(e.g., health awareness, access to information, perception of severity), (2) cultural and religious beliefs(e.g., peer influences, cultural and religious norms, stigma, likelihood of health issues interfering with social and work life), and (3) healthcare system interactions(e.g., lived and shared experiences from previous healthcare system interactions, cost)(Figure 1). Women are embracing digital health, particularly telemedicine and digital pharmacies, due to convenience and privacy.
Key findings specific to UI include:
• Women are bothered by their symptoms and desire education, treatment, and dismantling of the associated stigma.
• Lack of awareness of UI as a health condition is pervasive and a major contributor to extremely low care-seeking.
• Clinicians identified data gaps, including the need for prevalence studies and to develop guidelines and policy for fistulous and non-fistulous incontinence.
• Both clinicians and women with UI are eager for innovation, education, and policy changes to set the path for capacity-building in pelvic floor disorders management in Kenya and Nigeria.

Conclusions: Given UI prevalence and impact in Kenya and Nigeria, future women’s health efforts in SSA should include pelvic floor disorders. Key areas of need include building awareness, fostering research, and targeted healthcare capacity-building. Digital health innovations hold promise for facilitating progress, 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.