key: cord-0302191-tez1s7w9
authors: Besera, G.; Goldberg, H.; Okoroh, E. M.; Snead, M. C.; Johnson-Agbakwu, C. E.; Goodwin, M. M.
title: Attitudes and Experiences Surrounding Female Genital Mutilation/Cutting in the United States: A Scoping Review
date: 2022-03-31
journal: nan
DOI: 10.1101/2022.03.25.22272941
sha: 3717b44e47554f856a75a18fa2103d381b47ae5d
doc_id: 302191
cord_uid: tez1s7w9

In recent decades, growing migration to the United States from countries where female genital mutilation/cutting (FGM/C) is widely practiced has caused a rise in the number of women and girls in the United States who could have potentially experienced FGM/C. A scoping review was conducted to identify research and gaps in literature about FGM/C-related attitudes and experiences among individuals from FGM/C-practicing countries living in the United States. This scoping review identified 40 articles meeting inclusion criteria. The findings of this review suggest that both women and men from FGM/C-practicing countries living in the United States generally oppose FGM/C, and that women with FGM/C have significant physical and mental health needs and have found US healthcare providers to lack understanding of FGM/C. Future research can improve measurement of FGM/C by applying a health equity lens and taking into account the sociocultural influences on FGM/C-related attitudes and experiences.

Female genital mutilation/cutting (FGM/C) is a health and human rights concern defined by the World Health Organization (WHO) as "all procedures involving partial or total removal of the external female genitalia or other injury to the female genital organs for non-medical reasons" [1] . WHO classifies FGM/C into four types (Table 1) . FGM/C can have health consequences that are both immediate (e.g., pain, bleeding, swelling) [2] and long-term (e.g., obstetric complications, painful intercourse, psychological problems) [2, 3] . FGM/C has deep cultural and social roots, and among groups who practice FGM/C, reasons given for carrying out the practice include traditional beliefs, attitudes, and practices such as rites of passage to adulthood, social acceptance, religion, hygiene, curtailing girls' sexuality, preventing promiscuity, marriageability, and honor [4, 5] . It is estimated that at least 200 million women and girls have experienced FGM/C globally, with the practice concentrated in 30 countries in Africa, Asia, and the Middle East [6] . Previous studies have found FGM/C among women and girls who migrated from FGM/C-practicing countries to other countries, including in Australia, Europe, and North America [7] [8] [9] .

In the United States, FGM/C is illegal, as is the act of transporting an individual from the United States to other countries for FGM/C (known as "vacation cutting") [10] [11] [12] . A 2016 study estimated that as many as 513,000 women and girls in the United States could have experienced or be at risk of FGM/C, a threefold increase from a 1990 estimation using the same methodology on the earliest publication date). We conducted a targeted gray literature search of organizational websites, Google, Google Scholar, and ProQuest Dissertations. We also reviewed references of relevant articles and identified those that potentially met inclusion criteria. Once we collected articles, we exported all records to Endnote to check for duplicates. We then imported records to Covidence, a web-based software that facilitates reference screening and data extraction [18] .

The next stage of the scoping review involved selecting relevant articles through a twolevel screening process to determine if they met the inclusion criteria, which included:

• Data collected directly from women, men, or girls from FGM/C-practicing countries living in the United States.

o If studies included other populations (e.g., study participants not living in the United States, medical professionals), they must have disaggregated findings for women, men, or girls living in the United States. Studies that only included healthcare providers' attitudes and experiences or perspectives of non-US-based individuals were excluded.

o Studies that were non-data driven (e.g., commentaries, literature reviews) or did not present data collected directly from the populations of interest did not meet the inclusion criteria.

• Studies assessing either attitudes or experiences related to FGM/C.

• Availability of the full text of the article.

There were no other study design or methodological restrictions.

Study authors (G.B and H.G) independently reviewed each article's title and abstract to find articles that potentially met the inclusion criteria. At the second screening level, they independently reviewed the full articles identified during the first review. Both reviewers for use under a CC0 license. This article is a US Government work. It is not subject to copyright under 17 USC 105 and is also made available (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. Methods Appraisal Tool for mixed methods studies [22] . Reviewers gave an overall quality rating to each study and resolved discrepancies in any decisions through discussion. Overall, 26 studies were rated as "good/excellent," and the remaining 14 were rated as "fair." No studies were rated as "poor." Since this was a review of published studies, institutional review board review was not necessary.

After we removed duplicates, a total of 417 articles remained on the original list, including 388 records identified through database searches and 29 identified through other sources. After title and abstract screening, 69 studies remained. During full-text screening, we excluded 29 articles ( Figure 1 ). The final 40 articles consisted of 32 peer-reviewed articles, 7 dissertations, and one evaluation report ( Table 2) . Scoping review authors grouped findings into major themes and categories; results are organized and presented accordingly in the sections below.

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Among the 40 articles included, 18 were qualitative studies (45%), 16 were quantitative (40%), and 6 were mixed methods (15%) (Figure 2 ). The first study was published in 1985 [23] , and over half (63%) were published since 2014 [9, . The sample sizes ranged from 7 to (Table 2) .

for use under a CC0 license. This article is a US Government work. It is not subject to copyright under 17 USC 105 and is also made available (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. This article is a US Government work. It is not subject to copyright under 17 USC 105 and is also made available (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. in most of these studies, women generally opposed the practice but discussed these reasons when asked why the practice persists.

FGM/C as a cultural/religious practice. In at least 11 studies, women described their for use under a CC0 license. This article is a US Government work. It is not subject to copyright under 17 USC 105 and is also made available (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. understanding of FGM/C as a religious practice (or requirement), a cultural practice, or both [25,   28, 32, 33, 36, 42, 44, 45, 56, 60, 61] . Across studies, regardless of where respondents came from, they more commonly reported that FGM/C is a cultural rather than religious practice. In one study [32] , women reported that before migration they had thought FGM/C, specifically infibulation, was a religious requirement, but since migration they realized this was not the case.

In two studies, most women reported believing FGM/C was based in religion [56, 58] . This article is a US Government work. It is not subject to copyright under 17 USC 105 and is also made available (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. Studies with men included in the samples tended to be smaller and report fewer results than studies with women.

Men in these seven studies tended to report opposing FGM/C and to state that it should be discontinued. In the studies where such information was ascertained, most men preferred not to have their daughters undergo FGM/C [34, 42, 44]. The Johnson-Agbakwu et al. study [26] showed that participating men were aware of the morbidities FGM/C could cause and the laws against the practice in the United States. The Partnerships for Health study [36] likewise found that men in the study thought FGM/C was harmful to women. The Akinsulure-Smith and Chu study [34] reported that most men in the study had no preference for dating or marrying women with or without FGM/C. Men who did have a preference tended to prefer a woman without important that FGM/C be discussed in the community to raise awareness. Finally, Johnson-Agbakwu et al. [26] found that men in their study tended to report that healthcare providers lacked adequate knowledge and training related to FGM/C.

Most of the 40 studies included in this review collected data on women's self-reported Table 2) .

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Seventeen studies included information on women's gynecologic or obstetric health [9, 23, 27-29, 32, 33, 36, 37, 40, 41, 46, 48, 50, 52, 55, 57] . Women with FGM/C commonly reported painful menstruation, vaginal pain, urinary problems, and pelvic pain [9, 23, 27-29, 32, 33, 36, 37, 40, 41, 46, 48, 57] . In two studies [9, 29 ] that compared women with and without FGM/C, FGM/C emerged as significantly associated with some gynecologic complications.

Regarding obstetric experiences and outcomes, women reported experiences with childbirth pain and complications, pregnancy problems, and vaginal tearing [9, 27, 32, 33, 36, 37, 41, 46] . One study that compared women with and without FGM/C found that although there was no direct for use under a CC0 license. This article is a US Government work. It is not subject to copyright under 17 USC 105 and is also made available (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted March 31, 2022. ; https://doi.org/10.1101/2022.03.25.22272941 doi: medRxiv preprint correlation between FGM/C and type of delivery or overall childbirth experience, women with FGM/C were less likely to report a positive pregnancy experience [36] .

Seventeen studies explored women's experiences when seeking or receiving healthcare [9, 23, 25 were less willing to seek reproductive and maternal care compared with those without FGM/C. There was no association between a woman's FGM/C status and gaining entry into the health system, accessing a primary care provider, or seeing a specialist [39] . However, when considering FGM/C type, this study found women with more severe FGM/C types (II or III) were less willing to seek care and had more difficulty gaining entry into the health system and accessing a primary care provider compared with women with Type I [39]. Another study of Somali women found those with FGM/C more likely to receive a Pap test and have a place for healthcare compared with women without FGM/C [9] . However, in this same study, among women with FGM/C, the probability of having a designated place for healthcare was lower among women exposed to victimization (home or property looted or burned, abandoned or for use under a CC0 license.

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The copyright holder for this preprint this version posted March 31, 2022. ; https://doi.org/10.1101/2022.03.25.22272941 doi: medRxiv preprint thrown out by family, abducted, experienced sexual violence, attacked with a weapon, or witnessed a murder) compared to those who were not [9] .

Eight studies examined FGM/C and mental health outcomes among women, including post-traumatic stress disorder (PTSD), depression, and anxiety [9, 24, 29, 32, 33, 35, 41, 46] .

Three found no significant differences in mental health outcomes between women who experienced FGM/C and those who did not [24, 29, 35]. However, Fox and Johnson-Agbakwu 

Five studies explored women's experience of FGM/C and other forms of trauma or violence [9, 24, 35, 41, 46] . In Lever et al., all women with FGM/C also reported experiencing at least one other type of physical, psychological, or sexual violence, and most reported experiencing multiple types of violence [41] . Akinsulure-Smith and Chu found that a significantly larger proportion of women with FGM/C reported psychological and sexual torture than those without FGM/C [35]. Lastly, Fox and Johnson-Agbakwu found that women with FGM/C who were also exposed to other types of violence (e.g., sexual violence, abduction, witnessing a murder) had more unmet healthcare needs and a higher predicted probability of for use under a CC0 license.

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The copyright holder for this preprint this version posted March 31, 2022. ; https://doi.org/10.1101/2022.03.25.22272941 doi: medRxiv preprint experiencing problems during pregnancy and gynecological problems than those with FGM/C but not exposed to other types of violence [9] .

The studies included in this scoping review represent a growing body of literature exploring FGM/C-related attitudes and experiences of US-resident women and men, many whose lives have been directly or indirectly affected by the practice. In most studies that assessed attitudes surrounding FGM/C, both women and men generally opposed FGM/C. There was opposition to subjecting daughters to the practice, with some studies reporting perceived rejection by family or community members due to conflicting attitudes about FGM/C for daughters, family pressure to have daughters undergo FGM/C, or women's fears that family members might have girls undergo FGM/C without the mother's consent [31, 32, 37, 61]. Some studies reported participants' accounts that coming to the United States influenced them to be less supportive of FGM/C [32, 42, 60].

Physical health problems associated with FGM/C reported in the US literature are similar to those documented in the global literature: gynecological, sexual, and obstetric problems [2, 64, 65] . Severity of the FGM/C procedure is associated with greater health problems, and Type III, the most severe form of FGM/C, was the most common type reported in US studies despite being estimated to account for around 10% of FGM/C cases globally [1] . Over-representation of Type III in US studies may be due to the research emphasis on Somali women, who represent the largest African refugee population in the United States and among whom Type III is common

Women commonly had negative accounts of interactions with health services in the United States and the view that healthcare providers lack cultural sensitivity or understanding of for use under a CC0 license.

This article is a US Government work. It is not subject to copyright under 17 USC 105 and is also made available (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. Studies also indicate that negative experiences with the US healthcare system provoked feelings of fear, shame, and humiliation associated with FGM/C. This phenomenon, described as "re-traumatization," has been cited as a concern for women with FGM/C who migrate to countries where the practice is poorly understood and illegal [68] . Moreover, some women described reluctance to seek healthcare services in the with FGM/C had also experienced other types of physical, psychological, or sexual trauma or violence [9, 24, 35, 41, 46] . One found that among women with FGM/C, experiences of other trauma or violence compounded the likelihood of depression and reproductive health problems [9] . These findings indicate the importance of understanding FGM/C in the broader contexts of women's mental health and other traumatic life experiences rather than treating FGM/C as an isolated physical health condition.

The studies included in this review have several strengths. One strength is that they for use under a CC0 license.

This article is a US Government work. It is not subject to copyright under 17 USC 105 and is also made available (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The literature also has limitations and notable gaps. One limitation is that although some studies reported prevalence of FGM/C in their study samples, none can be generalized to all migrants in the United States from a specific country of origin or in a US geographic area. In fact, a representative sample that could yield a prevalence estimate for the United States is likely to be unattainable due to information about FGM/C not being systematically collected/reported and difficulty constructing a sampling frame. Studies of US participants from a single country of origin or community may not be comparable to those of people from other countries of origin or communities. A second limitation is that most of the studies relied on convenience and purposive sampling, which can contribute to biases, including coverage, non-response, and/or self-selection bias that limit the interpretation of findings. Third, most included studies relied on self-reported FGM/C status, which may not be a reliable way to document specific FGM/C status or typology [69] [70] [71] . Given that FGM/C is illegal in the United States and that it is considered a private and highly personal topic, the study results may have response and/or social desirability biases and may not accurately reflect participants' experiences or attitudes. Data collected on the illegal practice of families sending children abroad for FGM/C is also subject to response and/or social for use under a CC0 license.

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The copyright holder for this preprint this version posted March 31, 2022. ; https://doi.org/10.1101/2022.03.25.22272941 doi: medRxiv preprint desirability biases [72] . An understanding of the number of girls at risk for vacation cutting is needed to assess the overall number of US-resident women and girls at risk for FGM/C [13, 73] , but no study in this review attempted to assess the number of girls affected or at risk.

The limitations of this scoping review itself should also be noted. As a scoping review, this review synthesizes a wide range of research studies and describes available research, but does not systematically evaluate the evidence to answer a specific research question [17] . The review topics were restricted to women and men's attitudes and experiences related to FGM/C. Literature on related topics, such as healthcare providers' attitudes and experiences or perspectives of non-US-based individuals, was not included. Additionally, although we employed a broad search strategy, it is possible that relevant publications were missed, especially in instances where FGM/C was not the primary study topic.

A more comprehensive and accurate understanding of FGM/C in the United States may be possible through research studies that are more inclusive of the ethnic and cultural diversity of the practice. This would expand the data beyond what was most commonly described in this scoping review, which is the most physically recognizable Type III FGM/C (infibulation) ( Table   1 ). In studies where clinical genital exams are not feasible or acceptable to confirm type of FGM/C, validated tools to assist women reporting their FGM/C type more accurately, including visual aids, may have the potential to increase the accuracy of self-reported FGM/C type [74, 75] . Further, medical records were seldom relied upon in the included reviewed studies and could be informative in future FGM/C research. However, efforts would be needed to promote more complete and consistent documentation of FGM/C in medical records.

for use under a CC0 license.

This article is a US Government work. It is not subject to copyright under 17 USC 105 and is also made available (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. This article is a US Government work. It is not subject to copyright under 17 USC 105 and is also made available (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. This article is a US Government work. It is not subject to copyright under 17 USC 105 and is also made available (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. This article is a US Government work. It is not subject to copyright under 17 USC 105 and is also made available (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. This article is a US Government work. It is not subject to copyright under 17 USC 105 and is also made available (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. for use under a CC0 license.

This article is a US Government work. It is not subject to copyright under 17 USC 105 and is also made available (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. This article is a US Government work. It is not subject to copyright under 17 USC 105 and is also made available (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. This article is a US Government work. It is not subject to copyright under 17 USC 105 and is also made available (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. This article is a US Government work. It is not subject to copyright under 17 USC 105 and is also made available (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. This article is a US Government work. It is not subject to copyright under 17 USC 105 and is also made available (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. This article is a US Government work. It is not subject to copyright under 17 USC 105 and is also made available (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. "Partial or total removal of the clitoris and/or the prepuce (clitoridectomy)"

"Partial or total removal of the clitoris and the labia minora, with or without excision of the labia majora (excision)"

Type III "Narrowing of the vaginal orifice with creation of a covering seal by cutting and appositioning the labia minora and/or the labia majora, with or without excision of the clitoris (infibulation)

"All other harmful procedures to the female genitalia for non-medical purposes, for example: pricking, piercing, incising, scraping and cauterization" Source: World Health Organization, 2008, p. 4 [1] for use under a CC0 license. This article is a US Government work. It is not subject to copyright under 17 USC 105 and is also made available (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. This article is a US Government work. It is not subject to copyright under 17 USC 105 and is also made available (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted March 31, 2022. ; • Women with FGM/C were less willing to seek maternal and reproductive health care.

• FGM/C status was not associated with gaining entry to the health system, seeing a primary provider, or seeing a specialist.

• Women with more severe forms of FGM/C were less willing to seek care and had more difficulty in gaining entry to the health system and in accessing a primary provider compared to women with Type I. • Women reported a variety of reasons why their communities practiced FGM/C, including preventing premarital sex, marriageability, and reducing sexual urges.

• All women expressed they were aware of the health problems associated with FGM/C, and they were against the practice.

• Several women reported adverse health outcomes because of FGM/C. • All women were generally aware of FGM/C laws in the United States. None of the women felt anti-FGM/C legislation was effective. • Eight remembered their age of FGM/C, and this ranged from 3 to 18 years.

• No women reported their daughters had FGM/C. • Ten women were aware of problems associated with FGM/C, primarily mentioning excessive bleeding and difficulty during intercourse.

• Four women reported recurrent gynecological issues during the last 2 years; they all had Type III, and three reported these problems affected their marriage.

• Fourteen women were very or somewhat satisfied with the health services they received, compared to five who reported they were somewhat or very dissatisfied.

To explore patterns of cultural agreement and variation in knowledge in childbearing between Somali refugees and healthcare providers and their perceptions of FGM/C • Among all women, FGM/C was associated with having a designated place to receive healthcare, feelings of depression or flashbacks/nightmares about a traumatic event, and gynecological issues. Among women with FGM/C, the predicted probability of having a designated healthcare place was lower among those exposed to victimization compared to those who were not.

• Among women with FGM/C, those who were exposed to victimization had a higher predicted probability of pregnancy-related problems, gynecological issues, and unmet healthcare needs compared to women with FGM/C who were not exposed to victimization. • Six women experienced FGM/C between 5 and 10 years of age and one experienced it in infancy.

• Participants had traumatic memories of their FGM/C experiences.

• Women continued to experience sexual, physical, and emotional consequences of FGM/C. All women stated that they could not experience sexual pleasure.

• All women were opposed to their daughters undergoing FGM/C and said they would resist pressure by family in their country of origin to bring their daughters for FGM/C. Women described how such resistance could lead to alienation and ostracism from family members in their countries of origin and people from their countries of origin in the host country.

• Women's traumatic memories of FGM/C, combined with their reflection on the cultural practice and critical thinking skills to question the practice, led to resistance toward the practice.

Lever ( 

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FGM/C = female genital mutilation/cutting

UTI = urinary tract infection

PTSD = post-traumatic stress disorder

FGM/C type is based on World Health Organization classifications [1] : Type I "Partial or total removal of the clitoris and/or the prepuce (clitoridectomy

Partial or total removal of the clitoris and the labia minora, with or without excision of the labia majora (excision

Narrowing of the vaginal orifice with creation of a covering seal by cutting and appositioning the labia minora and/or the labia majora

All other harmful procedures to the female genitalia for non-medical purposes, for example: pricking, piercing, incising, scraping and cauterization