Discerning Deinfibulation: Impact of Personal, Professional, and Familial Influences on Decision-Making.

The past decades have seen large numbers of Somali women migrate across the globe. It is critical for healthcare workers in host countries to understand healthcare needs of Somali women. The majority of Somali female migrants experience female genital cutting (FGC). The most common type in Somalia is Type 3 or infibulation, the narrowing of the vaginal introitus. Deinfibulation opens the introitus to reduce poor health outcomes and/or allow for vaginal births. In this study, we explored the perspectives of Somali women living in the United States about deinfibulation. We recruited 75 Somali women who had experienced FGC through community-based participatory research methods. Bilingual community researchers conducted qualitative interviews in Somali or English. University faculty and community-based researchers coded data together in a participatory-analysis process. We identified four themes. (1) Personal Views: participants reported positive attitudes toward deinfibulation and varied on the appropriateness of deinfibulation before marriage. (2) Benefits: identified benefits included alleviation of health problems; improved sexual health, in particular reduction or prevention of sexual pain; and reclamation of body and womanhood. (3) Barriers: these included associated stigma and lack of knowledge by providers. (4) Decision-Making: most reported that husbands, healthcare providers, and elder female community members may provide advice about if and/or when to seek deinfibulation, though some felt deinfibulation decisions are solely up to the impacted woman. An ecological framework is used to frame the findings and identify the importance of healthcare workers in assisting women who have been infibulated make decisions.

Female genital cutting (FGC) type: proposing a multifaceted, interactive method for FGC self-assessment.

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 self-reflective discourse to investigate sensitive topics and guide clinicians in providing patient-centered, culturally informed care for patients with FGC.

Beautiful vulvas: expanding illustrative visual imagery of female genital cutting types.

BACKGROUND: Visual imagery has been used to educate healthcare providers, patients, and the lay public on female genital cutting (FGC) typology and reconstructive procedures. However, culturally inclusive, diverse, and anatomically accurate representation of vulvas informed by women possessing lived experience of FGC is lacking. AIM: We sought to apply World Health Organization (WHO) FGC typology to the development of type-specific visual imagery designed by a graphic artist and culturally informed by women with lived experience of FGC alongside a panel of health experts in FGC-related care. METHODS: Over a 3-year process, a visual artist created watercolor renderings of vulvas with and without FGC across varying WHO types and subtypes using an iterative community-based approach. Somali women possessing lived experience of FGC were engaged alongside a team of clinician experts in FGC-related care. Women and clinicians provided descriptive input on skin color variation, texture, and skin tone, as well as the visual depiction of actions necessary in conducting a genital examination. OUTCOMES: A series of vulvar anatomic illustrations depicting WHO FGC typology. RESULTS: FGC types and subtypes are illustrated alongside culturally informed descriptors and clinical pearls to strengthen provider competency in the identification and documentation of FGC WHO typology, as well as facilitate patient education, counseling, shared decision making, and care. CLINICAL IMPLICATIONS: Ensuring equitable representation of race, gender, age, body type, and ability in medical illustrations may enhance patient education, counseling, and shared decision making in medical and/or surgical care. FGC provides a lens through which the incorporation of patient-informed and culturally relevant imagery and descriptors may enhance provider competency in the care of FGC-affected women and adolescents. STRENGTHS AND LIMITATIONS: The strengths of this study include the development of visual imagery through an iterative community-based process that engaged women with lived experience of FGC alongside clinicians with expertise in FGC-related care, as well as the representation of historically underrepresented bodies in the anatomical literature. Study limitations include the lack of generalizability to all possible forms or practices of FGC given the focus on one geographically distinct migrant community, as well as the reliance on self-report given the inability to clinically verify FGC status due to the community-based methodology employed. CONCLUSION: Patient-informed and culturally representative visual imagery of vulvas is essential to the provision of patient-centered sexual health care and education. Illustrations developed through this community-engaged work may inform future development of visual educational content that advances equity in diverse representation of medical illustrations.

Understanding Women's Responses to Sexual Pain After Female Genital Cutting: An Integrative Psychological Pain Response Model.

The World Health Organization estimates that over 200 million women and girls have experienced female genital cutting (FGC). Many women and girls who have undergone FGC have migrated to areas of the world where providers are unfamiliar with the health needs associated with FGC. Both providers in Western healthcare systems and female immigrant and refugee patients report communication difficulties leading to distrust of providers by women who have experienced FGC. Sexual pain is one common problem requiring discussion with healthcare providers and possible intervention. Yet, existing clinical and research literature provides little guidance for assessment and intervention when sexual pain is a result of FGC. Several conceptual frameworks have been developed to conceptualize and guide treatments for other types of pain, such as back pain and headaches. In this article, we integrate four prominent models-the fear avoidance model, eustress endurance model, distress endurance model, and pain resilience model-to conceptualize sexual pain in women who have experienced FGC. The resulting integrative psychological pain response model will aid in providing culturally responsive clinical management of sexual pain to women who have experienced FGC. This integrative model also provides a theoretical foundation for future research in this population.

Psychosocial Factors Influence Sexual Satisfaction among Women with Vulvodynia.

Vulvodynia affects about 8% of women, many of whom report a negative impact on their ability to have sexually satisfying relationships. In this study, we examined predictors of sexual satisfaction in 207 women with clinically confirmed vulvodynia. We adapted a model examining resilience in chronic pain patients originally developed by Sturgeon and Zautra to include resilience factors (communication with partner about sexual health and coping strategies) and vulnerable factors (abuse history, pain intensity, rumination). These variables were regressed onto sexual satisfaction. In the full model, only emotion-based rumination was predictive of sexual satisfaction. Thus, focusing on emotion-based rumination in clinical intervention may improve sexual satisfaction.

The Need for Standardized Nomenclature in Electronic Documentation of Female Genital Cutting in Health Records.

To evaluate the quality of Electronic Health Record (EHR) documentation practices of Female Genital Cutting (FGC) by medical providers. A retrospective chart review study of 99 patient encounter notes within the University of Minnesota health system (inclusive of 40 hospitals and clinics) was conducted. Extracted data included but was not limited to patient demographics, reason for patient visit, ICD code used in note, and provider description of FGC anatomy. Data was entered into REDCAP and categorized according to descriptive statistics. Out of 99 encounters, 45% used the unspecified code for FGC. The most common reason for patient visits was sexual pain, though many notes contained several reasons for the visit regarding reproductive, urological, or sexual concerns. 56% of visits discussed deinfibulation. 11 different terms for FGC were used, with "female circumcision" being the most common. 14 different terms for deinfibulation were found within 64 notes. 42% of encounters included a description of introitus size in the anatomical description, and only 38% of these provided a metric measurement. This study found significant variation in the quality of FGC documentation practices. Medical providers often used the unspecified FGC code, subjective and/or seemingly inaccurate descriptions of FGC/anatomy, and several different terms for both FGC and deinfibulation. Clearly, more education is needed in clinical training programs to (1) identify FGC type, (2) use the corresponding ICD code, and (3) use specific, objective descriptions (including presence/absence of structures and infibulation status).

Gender-Based Violence in the Lives of Somali Women With Refugee Status: A Framework for Analysis and Action.

INTRODUCTION: Gender-based violence (GBV) poses a significant threat to women with refugee status. METHODOLOGY: Following our analysis based on a previously published scoping review, we introduce a conceptual framework based on postcolonial feminist theory to inform research, policy, and practice that addresses the unique risk factors faced by Somali women with refugee status experiencing GBV and encountering barriers to care. RESULT: The framework synthesizes existing literature, incorporates findings from previous work with Somali women, and emphasizes the importance of understanding structural and sociocultural factors influencing help-seeking. DISCUSSION: By developing women-centered interventions, health care and social service institutions can play a pivotal role in addressing GBV for Somali women with refugee status.

Our Body Our Health (Jirkeena, Caafimaadkeena): Somali Women's Narratives on Sexual Health.

Women across the globe have been subject to female genital cutting (FGC), with the highest rates in Somalia. FGC can result in sexual concerns, especially sexual pain and lower pleasure. Due to ongoing civil war and climate disasters, there is a large number of Somali immigrants and refugees living in countries where healthcare providers may be unfamiliar with the impact of FGC. In this qualitative study, sixty Somali women between the ages 20 and 45 and living in the U.S. shared their perspectives on how FGC has affected their sexual lives, including how they have coped with any complications attributed to FGC. Participants were recruited through convenience sampling and interviewed by a bilingual community researcher in either Somali or English. Data were analyzed through a participatory analysis process by academic and community researchers. Themes included sexual desire, arousal, and pleasure; sexual satisfaction; sexual pain at first intercourse; coping with sexual pain at first intercourse; long-term sexual pain, coping with long-term sexual pain. Results are discussed with a focus on agency of the participants, role of partners, and implications for healthcare professionals.

Sexual Health Care, Sexual Behaviors and Functioning, and Female Genital Cutting: Perspectives From Somali Women Living in the United States.

We investigated the sexual values, attitudes, and behaviors of 30 Somali female refugees living in a large metropolitan area of Minnesota by collecting exploratory sexual health information based on the components of the sexual health model-components posited to be essential aspects of healthy human sexuality. A Somali-born bilingual interviewer conducted the semistructured interviews in English or Somali; 22 participants chose to be interviewed in Somali. Interviews were translated, transcribed, and analyzed using descriptive statistics and thematic analyses. Our study findings highlighted a sexually conservative culture that values sexual intimacy, female and male sexual pleasure, and privacy in marriage; vaginal sexual intercourse as the only sanctioned sexual behavior; and the importance of Islamic religion in guiding sexual practices. Findings related to human immunodeficiency virus (HIV) revealed HIV testing at immigration, mixed attitudes toward condom use, and moderate knowledge about HIV transmission modes. Female genital cutting (FGC) was a pervasive factor affecting sexual functioning in Somali women, with attitudes about the controversial practice in transition. We recommend that health professionals take the initiative to discuss sexual health care and safer sex, sexual behaviors/functioning, and likely challenges to sexual health with Somali women--as they may be unlikely to broach these subjects without permission and considerable encouragement.