Pelvic health: lived experience, needs and resources for women with pelvic organ prolapse

Pelvic organ prolapse (POP) is a common and often distressing condition, affecting up to 50% of women at some point in their lives. Beyond its immediate physical and psychological impact, it also has potential long-term health implications, as research shows that many women reduce or stop physical activity due to their symptoms, an outcome that may contribute to broader declines in physical and mental wellbeing over time. This thesis aimed to explore the lived experience of reproductive-age Irish women with POP and address gaps in women and HCP’s knowledge and understanding and promote increased self-management of the condition. Chapter 1 offers a comprehensive overview of pelvic organ prolapse (POP), outlining its epidemiology, risk factors, clinical presentation, and associated impacts on quality of life. It further reviews current treatment approaches and relevant clinical guidelines, and explores the perspectives of women affected by the condition alongside those of the healthcare professionals involved in their care. The systematic review presented in Chapter 2 identified significant opportunities to improve the use of patient-reported outcome measures (PROMs) in clinical research related to POP. More effective integration of pelvic health considerations into general health assessments and PROM development could facilitate a deeper understanding of the biopsychosocial profile of women with prolapse. Two qualitative studies (Chapters 3 and 4) explored women’s experiences of living with and seeking care for POP. Findings revealed widespread lack of awareness and knowledge among both women and healthcare professionals about POP specifically and pelvic floor disorders (PFDs) more generally. Participants described difficulty accessing reliable information, delays in appropriate care, and feelings of being dismissed or unsupported, particularly in primary care settings. Despite these challenges, women expressed a strong desire to prevent progression of symptoms and engage in self-management. To support this need, a subsequent study Chapter 5 presents a protocol for the co-design of an evidence-based information website aimed at improving pelvic health literacy and supporting self-management for women with POP. The development of this digital resource, using participatory design methodologies, including think-aloud usability testing with both service users and healthcare professionals is described in Chapter 6. Separate focus group workshops including women with POP and HCPs were undertaken to identify key user requirements related to content, accessibility, and functionality. These findings informed the development of a national pelvic health information website: www.pelvichealthireland.ie. Using validated outcome measures (Discern Scale, SUS and eHIQ), the website demonstrated excellent quality, usability, and perceived impact among both women with POP and HCPs. It is hoped that this body of work will contribute to enhancing the self-management of POP among women, while also strengthening healthcare professionals’ confidence and capability in facilitating and supporting this process.