Abstract
Background: Self-reporting female genital cutting (FGC) status and types by patients and clinicians is often inconsistent and inaccurate, particularly in community settings where clinically verifiable genital exams are not feasible or culturally appropriate.
Aim: In this study we sought to discern whether integrating multiple dimensions of participant engagement through self reflection, visual imagery, and iterative discourse informed the determination of FGC status by a panel of health and cultural experts using World Health Organization (WHO) typology.
Methods: Using community-based participatory research, we recruited 50 Somali women from the Minneapolis-St. Paul, MN, metropolitan area through convenience and snowball sampling to participate in semi-structured interviews. Participants were asked to discuss their recollection of their original circumcision—including the procedure itself and their assessment of the type of circumcision they experienced. Anatomical drawings of uncircumcised and circumcised vulvas were shown to participants to assist them in identifying their FGC type. A panel of health and cultural experts reviewed and independently assessed participant FGC type. Interrater reliability and degree of concordance between participants and panel were determined.
Outcomes: Outcomes included the following: (1) development of WHO-informed, anatomically accurate visual depictions of vulvas representing FGC typology, (2) development of an iterative, self-reflective process by which participants self-described their own FGC status aided by visual depictions of vulvas, (3) application of WHO FGC typology by a panel of health and cultural experts, and (4) determination of the degree of concordance between participants and panel in the classification of FGC type.
Results: High interrater reliability (kappa = 0.64) and concordance (80%) between panel and participants were achieved. Clinical Translation: Incorporation of FGC visual imagery combined with women’s empowered use of their own self-described FGC status would optimize clinical care, patient education, and informed decision making between patients and their providers when considering medical and/or surgical interventions, particularly among women possessing limited health and anatomic literacy.
Strengths and Limitations: Strengths of this study include the incorporation of anatomically accurate visual representations of FGC types; the iterative, educational process by which participants qualitatively self-described their FGC status; and the high interrater reliability and concordance achieved between panel and participants. Study limitations include the inability to conduct clinical genital exams (due to the community-based methodology used), recall bias, and small sample size (n = 50).
Conclusion: We propose a new patient-informed educational method for integrating anatomically accurate visual imagery and iterative selfreflective discourse to investigate sensitive topics and guide clinicians in providing patient-centered, culturally informed care for patients with FGC.