Empowered management for pelvic pain: The experiences of women with persistent pelvic pain participating in an online self-directed self-management program while they wait for interprofessional care

Abstract

Background: Persistent pelvic pain is pain sensed in or around the pelvis and is often associated with negative cognitive, behavioral, sexual, and emotional consequences. The lack of interprofessional persistent pelvic pain management programs that address the complex interplay of biopsychosocial factors result in lengthy wait times and negative health outcomes. Limited access to evidence informed self-management educational resources contributes to poor coping strategies. Evidence shows that self-management education and strategies support patients while they wait for care. However, very few studies explore the patient’s lived experience of participating in an online educational program designed for persistent pelvic pain. Objectives: This study aims to understand the experience of women with persistent pelvic pain participating in an online, self-management education program (“Pelvic Pain Empowered Management” program) while awaiting care at an interprofessional pelvic pain clinic. Design: A descriptive qualitative approach was used to explore the experiences of women participating in an online educational program designed for cis women with persistent pelvic pain. Methods: We conducted semi-structured interviews with 11 women, transcribed the data verbatim using NVivo software (NVivo 12, QSR International Pty Ltd.), and analyzed inductively using previously established methods. Results: We identified four main themes relevant to women’s experiences of the program: (1) the program shaped expectations around upcoming pelvic pain appointments, (2) the program content is relevant and resonates with people with lived experience of persistent pelvic pain, (3) the program enhanced understanding of persistent pelvic pain, and (4) the program empowered people with skills and strategies to better manage their persistent pelvic pain. Conclusion: Our findings highlight how self-directed online patient education can be leveraged while persistent pelvic pain patients wait for care to support them in setting expectations around care and in engaging in pain self-management.