Review 1 results

Characteristics of studies in review 1

As described in Chapter 2, 57 papers met the inclusion criteria for review 1. Two studies were reported in multiple publications,159–162 hence review 1 includes 55 distinct studies reported in 57 publications. Regarding these duplicate studies, in both cases these were a doctor of philosophy (PhD) thesis and an associated peer-reviewed journal article. The PhD theses were included in addition to the journal article, as they contained relevant findings that were not reported in the published paper.

Of the 55 distinct studies, 46 were unique to review 1 and nine were also included in review 2 (as their samples included health professionals as well as patients).56,78,161,163–169 Fifty-three papers were in the English language; two were in German170,171 and two were in Spanish.172,173

See Appendix 6 for a detailed summary of study characteristics.

Type of publications

Over half of the included papers were peer-reviewed journal articles. In total, the review included 13 master’s and PhD theses,78,159,161,165,170,171,173–179 10 unpublished research reports,47,57,58,164,168,169,180–183 one book chapter184 and 33 peer-reviewed journal articles.56,59,160,162,163,166,167,172,185–209

Date range of studies

The studies represented a mixture of older and more-recent research, with publication dates ranging from 1985 to 2017. However, 29 papers had been published since 2011, hence half of the papers reflected a more contemporary context.

Geographical setting of studies

The studies represented a wide range of OECD countries, covering 14 different countries in Europe, North America and Australasia. Specifically, review 1 included studies from Australia,168,169,197,203 Austria,171 Canada,159,160,175,177,178,191 Finland,192 France,193 Germany,164,170 the Netherlands,206,208 New Zealand,165,197 Norway,167,199 Spain,172,173 Sweden,186,189,194,200,209 Switzerland,161,162 Scotland (UK),174,181,182 England (UK)47,56–59,163,179,180,183–185,196,202,204,205 and the USA.78,166,176,187,188,190,195,198,201,207 Research undertaken in the UK (including Scotland and England) provided the most input to the review, contributing over one-third of the papers (n = 18), followed by research undertaken in the USA (n = 10).

Sample/population/type of female genital mutilation/cutting

The studies were primarily of adult women. Only one study included girls under the age of 18 years but did not report health-related experiences of this group.186 There were no studies that focused specifically on health-care issues related to FGM/C in older (post-childbearing) women. Hence, although the aim of the review was to explore FGM/C across the life course, the studies all focused on generic issues relating to adult women and no further age-specific differentiation could be made.

The vast majority of studies were of women from FGM/C-practising countries in sub-Saharan Africa, and the majority of these included women specifically from countries in the Horn of Africa (Somalia, Sudan and Eritrea), where type III FGM/C is most commonly practised. Hence, the findings included in the review predominantly reflect issues affecting these population groups and issues that may be specific to having experienced type III FGM/C. Only three studies explicitly reported including women from Egypt/the Middle East but did not differentiate these women’s experience from the rest of the sample.166,176,184 The sample compositions of the included studies were as follows: Somali women,56,59,78,159,160,163,167,175,177,178,184–188,190–192,194,195,198,201,202,206,207,209 Somali and Eritrean women,161,162,168,205 Eritrean women,170,200 Somali and Sudanese women,57,179,199 Senegalese and Nigerian women,172 and mixed samples including women from several different countries.47,58,164–166,169,171,173,174,176,180–183,189,193,196,197,203,204,208 Almost half of the studies (n = 27) focused exclusively on women from Somalia.

Where there were mixed samples, none of the studies provided an in-depth differentiation of women’s experiences on the basis of the type of FGM/C they had experienced.

Focus, context and relevance of studies

The studies had varied research aims and foci; for example, some studies focused very directly on FGM/C-related health experiences (e.g. Moxey and Jones202), whereas others explored FGM/C as a general issue, not focusing only on health (e.g. O’Brien et al.181). Other studies explored health issues in a general way (e.g. Abdullahi et al.185), or focused on sexuality/identity (e.g. Abdi163) or on different aspects of life as a migrant (e.g. Guerin et al.197), but all included some findings that concerned FGM/C-related health care.

The largest number of studies (n = 18) focused specifically on women’s birth/maternity care experiences.56,59,78,165,167,174,187–189,191,193,194,198,200,202,203,209 Other study contexts were as follows: general views on health care,57,160,166,168–171,173,184,204,207 general attitudes towards FGM/C,47,58,159,163,164,178,181–183,186,201 experiences of sexual/reproductive health services,161,162,172,176,192,197 cervical screening,185,190,195,206 psychological issues,179,196,208 deinfibulation, 199,205 GP services,180 identity175 and pain/embodiment.177

Notably, only three studies included psychological health-care needs/experiences as a specific issue.179,196,208 There were no studies that examined women’s experiences of surgical reconstruction following FGM/C.

As described in Chapter 2, in order to assist development of the initial coding framework, we categorised each of the papers according to their overall relevance to the research aims. Sixteen papers were rated as being of high relevance,59,78,161,167–169,174,175,179,183,189,193,196,200,202,207 19 papers were rated as being of medium relevance56,162,165,172,178,180,185,187,188,190–192,195,199,203,206,208,209 and 22 papers were rated as being of low relevance.47,57,58,159,160,163,164,170,171,173,176,177,181,182,184,186,194,197,198,201,204,205

Methodological quality of included studies

The papers were each appraised by two reviewers using the JBI-QARI138 (see Appendix 7 for full details of the quality appraisal of each paper).

As described in Chapter 2, a broad scoring range was used to provide a ‘rough’ sense of the overall quality of the body of evidence. In accordance with this categorisation, 30 papers were assessed as being of high quality,59,78,159,161,163,167–169,173,174,177–179,181–183,186,190,192,193,195,196,199–203,205,206,208 21 papers were assessed as being of medium quality47,56–58,162,164,165,170,172,175,176,185,187–189,191,194,198,204,207,209 and six papers were assessed as being of low quality.160,166,171,180,184,197

A methodological weakness in many studies was a lack of apparent philosophical standpoint (question 1 of the JBI-QARI), making it difficult to assess the congruency of the chosen methodology. Likewise, many studies did not identify any clear methodology (simply stating that they adopted a generic ‘qualitative approach’), making it difficult to judge the congruence of the methodology with the research question and the methods (questions 2 and 3 on the JBI-QARI). Finally, a weakness across many studies was a lack of discussion of reflexivity (questions 6 and 7 on the JBI-QARI). Given the sensitive nature of FGM/C (and sexuality or migrant health care) as a topic, the failure to explore the researcher’s own theoretical position or their role, professional background, ethnicity, experience of FGM/C or relationship to the participants makes it hard to judge the dependability of the findings.155 A related issue that could affect the transferability of the findings concerns the study samples and the methods of recruitment that were used.155 The JBI-QARI does not assess in detail how recruitment was conducted; however, many studies had derived their samples from community organisations or used snowball sampling. The majority of studies did not discuss the potential implications of these recruitment strategies for influencing the results towards a particular standpoint (e.g. for or against FGM/C) or towards a particular view of health care or willingness to openly discuss FGM/C.

In addition to the JBI-QARI quality assessment, the papers were also categorised according to their ‘richness’ in terms of being ‘thick’ or ‘thin’ (i.e. their relative ability to provide explanatory insights and plausible interpretations based on a clear account of the research process).141–143 Thirty-three papers were classified as ‘thin’47,56–58,159,160,162–164,166,170–173,176–178,180–182,184–188,191,192,194,197,201,205,208,209 and 24 papers were classified as ‘thick’.59,78,161,165,167–169,174,175,179,183,189,190,193,195,196,198–200,202–204,206,207 The ‘thicker’ papers tended to be studies that were informed by an anthropological theoretical approach, that had followed a clear methodological stance or that had moved beyond mere description in their analysis towards a more interpretive and analytical account of the phenomenon of interest.

As noted previously, 23 papers were unpublished research reports or master’s and PhD theses (i.e. grey literature).47,57,58,78,159,161,164,165,168–171,173–183 The lack of peer review in these included papers could be considered a potential threat to the quality of the review findings; however, our detailed quality appraisal did not indicate any clear correlation between being published and the quality rating. For example, four theses and three unpublished research reports were rated both ‘thick’ and of ‘high quality’ (30% of the grey literature).78,161,168,169,174,179,183 However, out of 33 peer-reviewed journal articles, only 11 were rated as being both high quality and ‘thick’ (33% of the published journal articles – a very similar percentage).59,167,190,193,195,196,199,200,202,203,206 Indeed, of the six papers rated as being low quality (all of which were also rated ‘thin’), half (n = 3) were peer-reviewed journal articles160,166,197 and one was a peer-reviewed book chapter.184 Most of the papers were rated as being somewhere between high quality and low quality.

Review 1 themes

The findings from the 57 studies in review 1 have been synthesised into five analytical themes, which, in turn, represent a synthesis and interpretive analysis of 17 descriptive themes (Table 7). To start the coding process, studies that were both ‘thick’ and ‘highly relevant’ were identified and used to build an initial coding framework. Findings from other studies were then added into this initial coding framework and the framework itself was then further developed as necessary as new codes were identified. In review 1, 16 papers were categorised as ‘thick’ and ‘highly relevant’ and were used for the first stage of coding.59,78,161,167–169,174,175,179,183,189,193,196,200,202,207

The analytical themes were shaped to directly illuminate the objectives of the review in terms of exploring factors that influence communication, health-care-seeking and access, describing women’s experiences of care in various settings and identifying key elements of service provision that are considered important for good-quality service provision.

In the following sections, we present each analytical theme as a whole, followed by a discussion of each of their constituent descriptive themes. Owing to the large number of studies that contributed findings to each descriptive theme, rather than ‘crowd’ the text with multiple repetitive references to these individual studies, we have created a matrix (see Appendix 8) that shows which studies have contributed findings to each theme. Hence, we reference only individual studies in order to provide particular examples of issues that are identified within the themes or to illustrate a particular nuance within a theme.

Analytical theme 1: communication is key

The review found that communication was a key interpersonal process that underpinned women’s ability to seek care, to obtain care and to have a positive care experience. Conversely, difficulties in communication negatively affected all of these dimensions. Communication about FGM/C was characterised by issues that might be expected within migrant women’s encounters with new destination country health-care systems, such as language barriers in consultations. However, communication about FGM/C presented an additional layer of complexity related to the fact that FGM/C was seen by both women and health-care providers as a deeply personal, private and sensitive issue touching on a range of taboos associated with gender, culture and sexuality – all issues that in many societies are shrouded in secrecy and silence. When women encountered providers who were able to overcome taboos and cultural differences, it forged bonds of trust and facilitated an environment in which women were able to talk about their FGM/C and to explore options for care. However, the majority of studies reported challenges and problems with communication that led to women being unable to talk about their problems or to explore appropriate treatment options, led them to avoid health care in general and generated a sense of mistrust in the system.

Theme 1.1: language barriers and interpretation challenges

The majority of studies (n = 31) reported that communication about FGM/C was severely hindered by language barriers. This was particularly a problem for older migrant women and women who had recently arrived in a destination country. Language barriers meant that women were unable to form a trusting relationship with their provider, adequately express their needs or understand information or advice. This led to frustration and increased anxiety, especially in a context where consultation times were often limited.56,165 In some cases, women felt that they had had poor clinical experiences as a direct result of their inability to communicate about FGM/C.165,181,186 In other examples, women avoided mentioning their FGM/C at all because they knew that they would not be able to explain it.57,162,165

Language barriers were usually addressed through the use of formal or informal interpreters, and studies identified a range of associated challenges. These were partly related to accessibility and partly related to the sensitivities of talking about an issue that was usually regarded as personal, private and taboo and for which specialist terminology may be required. For example, in some cases, there was no formal interpretation available (or it necessitated long waits) and women had to rely on family members, their husbands or other community members.58 Although this was sometimes a useful strategy, as a sensitive and private issue FGM/C was considered an unsuitable topic to discuss in front of children or informal lay interpreters (such as neighbours).56 Husbands were sometimes reported not to translate correctly.207 Where formal interpretation services were used, women reported that interpreters sometimes did not know the correct terminology, did not understand FGM/C or were embarrassed and did not translate fully or correctly.56,190 Likewise, women reported particularly severe embarrassment if an interpreter was male and hence would be reluctant to discuss FGM/C at all:195

‘It is a really scary experience not to have someone who can explain’ . . . While many participants described as helpful the use of husbands or relatives as interpreters, others were embarrassed to explain aspects of childbirth in front of a relative.

This theme mainly related to maternity care interactions, but also to communication about cervical cancer screening.168,169,206

Theme 1.2: ‘can’t talk, not asked’ – double silence and cultural taboo

The studies suggest that in many cultures, as an issue related to sex and sexuality, FGM/C is shrouded in a culture of silence and is rarely discussed. This theme was reported by 37 studies. Women reported a lack of open discussion about FGM/C and related health matters within their own communities.57,160,174,179,180,183,204

At the same time, owing to prevailing cultural taboos and uncertainty about how professionals would react, women reported feeling highly embarrassed and hesitant about mentioning FGM/C to their health providers and often would not mention it at all, even when they had questions or anxieties.47,57,165,179,200 This finding was reported across all country contexts and with all cadres of health-care professionals, including midwives174,189 and medical doctors.175,187 Some studies reported that, if available, women would seek out providers from their own cultural backgrounds as communication was then easier.175 Other studies reported that women were particularly hesitant about raising the subject of FGM/C if they thought that the provider was unfamiliar with the issue, for example GPs and providers in lower-prevalence areas where there were no specialist services.47

Two recent studies from the UK reported that women might be hesitant to mention FGM/C for fear of being reported to the authorities.47,182

The silence around FGM/C was also attributed to providers failing to raise the topic. Hence, a commonly reported finding was that, even when women appropriately accessed relevant services, for example GPs or antenatal services,47,58,202 and might appreciate the general care offered,173,192 health-care providers often did not ask about FGM/C, even when the consultations were for pregnancy-related check-ups. The consequence was that FGM/C was sometimes not identified or discussed until women presented in the labour room, so opportunities for care planning or birth planning were missed.174

Interestingly, many studies suggested that women strongly preferred health providers to initiate FGM/C-related conversations and found it acceptable to be asked, as long as it was done in a sensitive manner. In addition, as hinted at by the quotation above, some studies reported that women found communication to be easier when supported by a knowledgeable community advocate or confident peer.174,175,180,183,190 Other studies emphasised that open communication was predicated on being able to develop a trusting relationship with the health professional, which, in turn, required time and continuity of care.56,168,169,202

The majority of studies reported this finding in relation to the uptake of maternity care, but several also mentioned women being reluctant to seek out smear tests because they felt unable to discuss their FGM/C.180,181,206

Theme 1.3: cultural (in)sensitivity

This theme was reported by 34 studies. In many studies, women described experiencing comments and questions from health providers that were perceived as clumsy, insensitive or intrusive. As a result, women reported feeling ashamed, scared or stigmatised. Such encounters inhibited women from talking about their FGM/C and, in some cases, led to them avoiding examinations or health-care services:170,176

The doctor was not comfortable with me. He asked if I enjoy violent sex with my husband. I don’t feel comfortable to talk about sex even with females – yet here is a male doctor examining my genitals and making mean comments.

By contrast, culturally sensitive communication was greatly appreciated and enabled women to openly discuss their FGM/C and related questions.182,193,202

Analytical theme 2: access to care – influenced by an interaction of multilevel community and health service processes

The review found that access to care related to FGM/C was influenced by an interaction of factors operating at individual and community levels as well as at health system and service levels. For example, at individual and community levels, studies showed that care-seeking was influenced by cultural norms around health and sexuality, collective approaches to decision-making and the knowledge and information that individuals and communities had about FGM/C and health service availability. These factors influenced whether or not a woman would seek care, at what stage of her life and where. However, the studies also showed that care-seeking choices were shaped by the types of services available and that outcomes were influenced by the extent to which the health system, health services and health practitioners were ready and able to provide the range of support that women may need at different points in their lives. Hence, the review showed that there were challenges within communities in terms of seeking care and finding the right services. However, even when services were appropriately accessed, care was sometimes haphazard and suboptimal owing to variable levels of staff expertise and inconsistent and unclear referral pathways, policies and procedures. This analytical theme was derived from four descriptive themes, which are outlined in turn in the following sections.

Theme 2.1: influence of cultural norms

The studies showed that cultural norms around health and sexuality strongly influenced women’s views towards, and access of, health services. Thirty-five studies contributed to this theme. Particular dimensions of this are directly relevant in relation to FGM/C. For example, many migrant groups represented in the papers came from low-income countries with fragile health systems, where care has to be paid for by individuals. Women noted that, consequently, common ‘Western’ forms of care-seeking, such as preventative care-seeking (e.g. cervical cancer screening) or going for check-ups and tests, were unfamiliar and were sometimes viewed as unnecessary. For such communities, health care was more likely to be sought only when acutely symptomatic or at key life stages such as pregnancy. Likewise, extensive planning, discussions and tests during antenatal care (e.g. for birth planning or to consider options around deinfibulation) were not always expected and were not seen as the norm:

What would my friends in Somalia say if I went a long way to hospital for a check-up, knowing that everything was OK with the pregnancy? – Somalian women do not always want to go to the doctor . . . if something goes wrong we will feel it.

Furthermore, cultural norms around sexuality had a strong influence on the timing of care-seeking. In many studies, women reported that strong cultural imperatives valuing premarital chastity and virginity meant that they would avoid procedures requiring gynaecological examinations [e.g. Pap (Papanicolaou) smear testing58,169,195,206], and, especially for those with type III FGM/C, the general norm was to avoid seeking deinfibulation prior to marriage and pregnancy owing to the cultural pressure to maintain chastity, prove their virginity and to remain ‘closed’ for their husbands.161,165,166,195,199,202

This norm was so strong that some studies reported younger women wishing that they could undergo deinfibulation, experiencing unpleasant symptoms and being aware of services but feeling unable to resist community pressure.179,199,205 Some exceptions to this norm were reported, but mainly in the context of needing help for particularly difficult or painful symptoms.202

Cultural and religious norms also led to a very strong reported preference for female health providers. Many studies reported that women would feel comfortable talking to, or being examined by, only a female health provider and might avoid care altogether if the provider was known to be male.57,58,161,162,168,175,177,180,185,188,190,195,198,202,206–208

Care-seeking in relation to mental health issues associated with FGM/C was infrequently reported and a few studies suggested that this may also be linked to cultural norms in which mental health is still often viewed as a stigmatised issue and, like FGM/C itself, is seen as hard to talk about.58,165,178,179,198

Theme 2.2: influence of the family

Nineteen studies reported that access to care in terms of health-care decision-making, especially among Somali women, was strongly influenced by the views and advice of the wider family and peer group. In the maternity context, this had an impact on the decision-making around uptake of antenatal care and caesarean sections.78,175,179,195,198,202,209 The family also influenced decision-making around FGM/C specifically; for example, as mentioned in Theme 2.1: influence of cultural norms, women considering premarital deinfibulation reported that they might avoid informing their direct family members as they were aware that they would otherwise come under strong pressure to change their mind owing to fears over their future marital prospects.183,205

For married women with type III FGM/C, studies indicated that the views of husbands were of paramount importance and that women generally felt that they needed their husband’s permission to undergo deinfibulation (outside the context of childbirth):

. . . my friend she wants to do that [deinfibulation] but her husband doesn’t let her . . . I told her, this is good for you – go and do. She said OK but her husband said no . . . Maybe if she did this [deinfibulation], it would have been a big problem in the family.

Theme 2.3: knowledge and information about female genital mutilation/cutting services

Accessing care was also linked to women’s knowledge and information about FGM/C. Thirty-four studies contributed to this theme. Many studies reported that women felt that they lacked knowledge and information about FGM/C itself and about the availability of specialist service provision. In some studies, women expressed a desire to be informed in more depth about what care options might be available and noted that the main emphasis within services appeared to be on pregnancy issues in general rather than management of FGM/C specifically:162,165,196

They need to have someone that talks to you before and while you have a baby. I would have wanted someone to help me and tell me what was going to happen but I never got that . . . You know someone who is specially trained . . . who understands FGM [female genital mutilation].

In some studies, women expressed a desire for more information. Some suggested that leaflets should be available providing this detail,58 but others noted that some groups of women would prefer information to be provided face to face or via community-based education approaches rather than through leaflets, which could be hard to understand, especially if there were language barriers.59,167,169

Regarding knowledge of services, some women reported being aware of mainstream services such as GPs and maternity services, but were much less aware of specialist services related to FGM/C.58

In one study from the UK, this seemed to be particularly likely if women lived in low-prevalence areas.47 Women were also less likely to know about the existence of non-maternity-related FGM/C specialist services (e.g. counselling or group support).58,179,181

Theme 2.4: ‘hit and miss’ care

This theme, reported in 38 studies, relates to a common finding across countries and time periods that women had problems with receiving appropriate care in relation to management of their FGM/C. As in Theme 2.3: knowledge and information about FGM/C services, in some cases this could be attributed to lack of availability of specialist services but also to providers or the ‘system’ being unprepared. Hence, obtaining the right care appeared to be ‘hit and miss’, dependent (somewhat by chance) on finding a particular service or a particular care provider rather than care provision being offered or available consistently across care contexts.168

Many studies cited situations in which opportunities to identify FGM/C during a consultation were missed, which was attributed to providers lacking awareness of FGM/C (and associated specialist services) and hence failing to ask the right questions, undertake an examination or make timely referrals.58

Maternity services were more likely to have knowledgeable providers and responsive systems, but even here women reported situations in which they felt that their FGM/C had been mismanaged owing to a lack of awareness and a lack of appropriate referrals.58,173,180,183 The most common issue was failure to have been asked about FGM/C, meaning that it was not included in birth planning discussions and was identified only once labour had started:

She said that her friend was FGM and she had heard that she can get it open before delivery, but unfortunately her midwife didn’t know about the clinic . . . My friend stopped searching and . . . the labour was so difficult . . . they didn’t have time to open her first so she [tore] under the delivery.

Two studies58,203 noted how continuity of care was a good way of ensuring that adequate relationships and, hence, care plans could be developed:

Participants experienced frustration over a lack of continuity of care . . . This meant explaining themselves to each new person they encountered, which was described as . . . ‘very hard and challenging.’ Conversely, when participants accessed a service with good continuity of care, they would recommend it to their friends.

Women were also more likely to express satisfaction when they had received care from specialist services.181,202

Analytical theme 3: cultural and bodily dissonance – striving for cultural and bodily integrity

The review found that FGM/C and its clinical management involves experiences of cultural and bodily dissonance and striving for cultural and bodily integrity. This analytical theme refers to changes in and challenges to women’s sense of cultural and bodily identity and integrity as a result of their experiences associated with FGM/C in the destination country, and particularly through their encounters with the health-care system (manifested during experiences of clinical examinations, childbirth, deinfibulation and reinfibulation). The theme also describes women’s responses to experiences of dissonance, in which their decision-making and actions can be understood as a desire to maintain a sense of cultural and bodily integrity. This theme highlights differences in and changes to cultural meanings and values related to FGM/C and how these differences and changes influence the way that women and health professionals define health issues, make decisions around FGM/C care and experience that care. When mutual interpersonal cultural understanding is not achieved, women may experience suboptimal care and may distrust the health system and their health providers. If women feel understood, they feel safe and reassured, resulting in a sense of bodily and emotional integrity. This theme comprises four descriptive themes.

Theme 3.1: moving from normal to different

This theme was reported in many studies (n = 40). Some women described becoming aware of FGM/C as something that is ‘different’ only once they moved to another culture. At this point, some started to become aware of the suffering and symptoms that their FGM/C may have caused them. They started to question and resist aspects of their culture that they had previously taken for granted and to feel uncomfortable with their own bodies and sexual identity.168

However women also reported feeling shame and anger at being labelled as ‘different’ and ‘mutilated’ by the dominant discourse in the destination country and by health professionals. They felt that their culture was misunderstood.163,170,183,185,193

This experience of dissonance made some women feel reluctant to mention FGM/C to health providers or caused them to feel extremely uncomfortable during health-care consultations, thereby limiting the opportunity to discuss the issues more openly and to achieve greater mutual understanding.78,168,189

Theme 3.2: threat to the self – reliving female genital mutilation/cutting pain during clinical interventions

Potential challenges to cultural or bodily integrity were manifested at key points in women’s health-care experiences and were explored in 28 studies. For some women, childbirth, episiotomies, caesarean sections and procedures involving vaginal examinations (such as smear tests) could evoke traumatic flash backs of the original FGM/C:59,208

You always remember it. They decide to cut me, and when she went to do it she didn’t explain to me and I panic. I nearly kick her. Two of the nurses held me down. That was it . . . I was a little girl again being held down.

In addition, some women reported being extremely fearful of undergoing medical procedures (tending to avoid these where possible) and reported these as causing severe pain, bodily reactions (such as shaking) and emotional trauma.177,184,189,193,196 These reactions were not always consciously linked to FGM/C and in some studies it was clear that neither the women nor the provider understood why the women might be reacting with such fear and apprehension, making it easy for women to be labelled as ‘difficult’, when they actually needed care and support:191,210

I was so scared of childbirth I kept fainting and the doctor got cross with me . . . and said I was doing it on purpose, but that wasn’t true . . . I had to pretend it wasn’t me there as the pain was too bad as they had to cut me up again.

Furthermore, many women came from societies in which childbirth is a dangerous life event, and this social context added to other fears. Linked to this, a key area of dissonance and distress was around caesarean section, with many studies (primarily with Somali women) reporting women expressing particular fears of having to undergo a caesarean section, linked variously to a strong cultural preference for ‘natural’ childbirth as a mark of successful womanhood, a fear of being cut again and a fear of death.78,194,202,203,211 When put together with communication barriers, childbirth decisions regarding caesarean sections were often mistrusted by women, described as a punishment, or as a Western way of birth control, to get the women to conform to having fewer children.56,78,187 Many studies reported women feeling that health-care professionals preferred carrying out caesarean sections if their patient had undergone FGM/C because of a lack of medical knowledge of vaginal delivery in circumcised women.58,162,178 Mistrust ensued when women felt that they were not listened to in their preference for, or given an opportunity to try to have, a vaginal birth and there was a view that health professionals did not treat women fairly in overprescribing of caesarean births when there was often no medical indication for it. In one study, women reported avoiding attending the hospital until the last minute as a way of avoiding medical interventions.211

Theme 3.3: being opened – complexities of deinfibulation for women with type III female genital mutilation/cutting

The experience of dissonance and quest for integrity was also seen in views and experiences around deinfibulation and was reported on by 28 studies. As noted in Theme 2.1: influence of cultural norms, for cultural reasons, ‘being opened’ medically was seen as necessary primarily after marriage and primarily in the context of pregnancy and childbirth rather than at an earlier stage of a woman’s life.159,160 There were no studies that explicitly or exclusively focused on the views or experiences of unmarried women, but some studies reported examples of unmarried women for whom the need to maintain cultural and bodily integrity outweighed the experience of physical pain or discomfort, even when women knew about the option to seek surgical deinfibulation.165,179,199 There were few reported exceptions to this rule, although one study suggested that, for some women, finding out about the option for surgical deinfibulation was empowering and deinfibulation was subsequently seen as a way of asserting control over their bodies and lives.183

Most studies reported that women preferred to be ‘opened’ during labour to avoid the pain and trauma of being cut twice.78,161,177,199,202,205 However, some studies suggested that this view could change towards the medically preferred advice of antepartum deinfibulation if there were opportunities for women to have appropriate discussions conducted in a sensitive way in the context of a trusting relationship with a health-care provider.181,189

However, given that FGM/C is often not discussed during health-care consultations, women’s current reported preferences around deinfibulation timing may also reflect the fact that they may not be receiving the right information at the right time, and thus may not be in a good position to make informed decisions on this matter.165,170,181,183

Theme 3.4: being changed – complexities around reinfibulation

A consistent finding across the studies within this theme (n = 19) was that ‘being opened’ could involve significant emotional, physical, social and relational adjustments as women’s bodies were changed. For some women, deinfibulation was firmly welcomed, although still required a period of ‘getting used to’ a different way of looking and feeling.168,205 For other women (especially women from Sudan where it is a cultural norm in some regions to be closed again after childbirth), there was ambivalence about these changes and some women requested to be ‘closed again’ to varying degrees.165,168,175,183,188,199,200,205

In most OECD countries, reinfibulation is illegal, and some studies reported women feeling very upset when their requests were denied by health professionals, experiencing this as a denial of their agency and integrity:170,197

I became a victim in Sudan already when I was 4 years old; I had no choice. Now I have to become a victim again after delivery, when the midwives refuse to resuture me. I just ask for a few stitches, not to have an open wound.

Consequently, some women reported seeking medical deinfibulation during holidays in their home countries.181 One study in Australia168 reported that women were sometimes unclear about the meaning of reinfibulation vis a vis suturing following episiotomy, with some women unsure about whether or not surgical repair constituted reinfibulation.

Analytical theme 4: disempowering care encounters

In many situations, the care received by women in relation to their FGM/C was experienced as fundamentally disempowering. Women described experiencing negative attitudes or behaviours from health professionals and poorly managed clinical interventions in which they felt that they were not respected or listened to. Many studies reported examples of care encounters that left women feeling retraumatised, voiceless, without power to question interventions and vulnerable in the hands of an unprepared system. Such experiences caused women to feel unsafe and disempowered. There were many examples where women felt that care had gone wrong or where experiences had been poor, and women felt that these situations could have been avoided with better communication, cross-cultural understanding and sensitivity. Some women actively resisted being stereotyped or controlled and tried to assert their autonomy within a care encounter, strategies that were sometimes perceived by professionals as ‘being difficult’ and that then compounded an already-challenging situation. Some women responded by avoiding health services where possible, and/or lost trust in their providers or sought out ‘known’ providers recommended through peer networks. This analytical theme comprises four descriptive themes that cut across all countries, time periods, population groups and care contexts.

Theme 4.1: feeling exposed and humiliated

Across many studies (n = 40), women reported that the reactions of health-care professionals to their FGM/C had left them feeling ashamed, objectified, humiliated and exposed. This was primarily the case with health-care professionals who were unfamiliar with FGM/C and who were encountering it for the first time. In these situations, women reported that health-care professionals often reacted with extreme shock when they saw that a woman had been cut. Some tried to hide their shock and avoided mentioning anything at all, making the encounter feel uncomfortable. Others openly expressed horror or disgust or reacted insensitively by asking intrusive or inappropriate questions. In many cases, colleagues were called in to be consulted or to ‘have a look’ (sometimes without consent189,191), causing women to feel that their privacy had been violated and that they had been put on display. Such experiences left women feeling angry or very distressed.78 Indeed, in one study in France, a participant likened her experience to being re-violated:

I was installed with my legs spread apart – they all came to see . . . I didn’t see any reason why they came . . . except for the fact that I was excised. All those people . . . entered into my intimacy without my authorization . . . didn’t ask . . . I felt that it was an aggression.

In some cases, these experiences left women wanting to avoid further contact with services and/or feeling unable to discuss their care any further as it was clear that the provider had limited knowledge about FGM/C.176 Several studies made the point that negative experiences of a particular service or provider would then be discussed within peer and community networks, and hence could have an impact beyond the individual woman, potentially affecting the way others in the community might engage with care.78,160,170,174,192,196,208

Theme 4.2: feeling judged and stereotyped

Many studies (n = 36) reported that women often felt judged and discriminated against by care providers. Women reported feeling that health professionals made negative assumptions about them and provided suboptimal care based on racial, religious or other stereotypes and misconceptions about their culture in general as well as about FGM/C specifically. Such experiences caused distress, anger and avoidance of that particular health professional or service.

The studies reported experiences of stereotyping on assumed characteristics related to race, ethnicity, religion or socioeconomic status (i.e. these were experiences that may be common to migrant women in general, not just related to FGM/C).59,180,183 For example, women reported health professionals making assumptions or disparaging remarks about them having too many babies, lacking language ability, being poor or being uneducated.168–170,173,174 These encounters left women feeling judged and treated as if they lacked personal agency, sometimes causing them avoid health services:

The women described how the attitudes of the caregivers made them reluctant to return to the regular antenatal controls at the health centers. Women stated that they preferred to stay at home, even if they knew that they had health problems during pregnancy, to avoid alleged insults from the midwives.

With regard to FGM/C, women felt that health professionals often appeared to look down on their culture as ‘barbaric’.57,58,78,159,197,204 At the same time, they expressed annoyance at being treated over-simplistically as ‘victims’ and, hence, objectified.164,196,204,208

Theme 4.3: lack of choice, power and control

In this theme, reported by 32 studies, women reported experiences in which they felt that they had lacked choice or control within the health-care encounter, especially in the maternity setting and around key interventions such as caesarean sections or episiotomies. Lack of control was experienced in terms of feeling excluded from health-care decision-making, not being informed, not being listened to, feeling at the mercy of ‘the system’ and feeling unable to express their needs. These experiences were exacerbated when women were treated by inexperienced providers, when there were language barriers and for women still new to a country and unfamiliar with the health system:

Participants experienced an overwhelming sense of fear, loneliness, and ‘not knowing’ during their birth experience, as often they had no prior contact with the Australian health system . . . All participants felt that what was happening in the hospital environment was not adequately explained.

Such experiences could be highly traumatising, and women’s attempts to assert control were sometimes construed by health professionals as being ‘difficult’:78,170,187,191,196,198

They decide to cut me, and when she went to do it, she didn’t explain . . . and I panic. I nearly kick her. Two of the nurses held me down. That was it . . . I was a little girl again being held down . . . It was like a bad dream and I couldn’t wake up.

In labour, women described that FGM/C was often not discussed at all or that they were not consulted about interventions such as deinfibulation or caesarean section. This led to suspicion and fear and was particularly reported in studies conducted with the Somali community:

I can’t say that the birth went well. The midwife said that I couldn’t give birth without being cut . . . otherwise the baby won’t come without a caesarean section or I can lose the baby. Nobody asked me what I thought. I was there . . . without pain relief, nothing.

Theme 4.4: feeling unsafe and vulnerable

Many studies (n = 46) reported care encounters where women ended up feeling unsafe and vulnerable, primarily when they were treated by providers who they perceived to be inexperienced in dealing with FGM/C, and, as above, when they faced language barriers or were unable to express their own preferences. Such encounters often led to the perception of poor-quality care or poor clinical outcomes. The following example (from England) describes the experience of a woman in labour (approaching delivery) who was infibulated:

. . . the midwife and junior medical staff . . . appeared confused and undecided as to how to manage her infibulation. The woman tried to communicate that she needed an anterior episiotomy, but was unable to do so, owing to her lack of English and, she felt, their lack of effort . . . in trying to understand her.

This woman was eventually given a mediolateral (downwards) episiotomy, which she felt was not sufficient, and, as the baby emerged, she developed a large perineal tear.

Women expected health providers to be knowledgeable, competent and confident in managing their FGM/C. Many women reported times when this did not seem to be the case. The consequences ranged from providers failing to recognise, identify or discuss FGM/C174 to situations in which they felt that their care had been adversely affected as a direct result of poor provider skills (e.g. having unnecessary caesarean sections or extensive perineal tearing).58,165,167,170,173,174,186,200,202,204,207 Women endured such situations feeling unsafe and highly vulnerable, often describing painful and traumatic experiences.168

Feelings of vulnerability were heightened for women who lacked social support.57,189,193,202 In contrast, women reported feeling safe and highly reassured when they encountered providers who appeared to be knowledgeable or experienced:56,58,168,169,174,182,183,196,200

I was lucky when I met a midwife in Sweden who knew about circumcised women. This was a great help to make me feel secure because it was my first time to be pregnant and to live far from my parents and family.

Analytical theme 5: positive care encounters

As seen in previous sections, the review has revealed many reports of poor care and difficult experiences in relation to FGM/C. However, many studies reported a mixture of experiences, including both good and poor care. High-quality care was conceptualised by women as care that is safe, respectful, culturally sensitive and compassionate. The essential process underpinning the experience of ‘good’ care was having a sense of trust, both in the individual provider and in the ‘system’ as a whole. Trust was essential for, and developed from, positive care experiences. Positive experiences were associated with the development of a good relationship with health professionals who were perceived to be knowledgeable and culturally sensitive, facilitating open communication and a sense of being in safe hands. Trust in the ‘system’ was linked to women’s appreciation of the availability and accessibility of services (compared with those in their home countries) but particularly when services were perceived to be prepared to be responsive to community needs (e.g. provision of appropriate interpretation services) and to manage issues relating to FGM/C (e.g. by having specialist services or specialist providers). This analytical theme has two constitutive descriptive themes. The first describes women’s actual experiences of ‘good’ care. The second sets out women’s views on what good care should look like, and includes their recommendations and suggestions.

Theme 5.1: trusting and appreciating providers and the system

Women’s accounts, reported in 34 studies, identified many instances of good care and of being satisfied with their care, as well as highlighting an appreciation of services that may not have been available in their own countries. With respect to maternity services in particular, there were many narratives of satisfaction with a warm welcoming environment, kind caring staff (especially midwives) and responsiveness to language barriers.58,165,168,169,181,182,192,194,196,202,209,211

On an interpersonal level, women’s narratives highlighted two key elements that underpinned women’s positive care experiences. The first was feeling that they were in safe hands and in the care of an experienced provider. Trust was greatly enhanced if women felt that providers were knowledgeable about FGM/C:56–58,168–170,172,174,177,182,196,200,202

My first meeting with a midwife was very good because I was lucky to meet a midwife who knew about circumcision from her previous work in Africa. Thanks to God, she had experience so it went well.

The second element was the experience of respectful and sensitive care, which was essential to enable the development of a trusting relationship. Women greatly appreciated being treated with respect and compassion, being given choices and experiencing open and culturally sensitive communication:

The midwives can talk about it during the pregnancy. You need to talk to the woman, ask her opinion, explain the bad parts to her so that she won’t do it to her daughter. During the labour, they spoke to me about my circumcision and I was happy . . .

We have a tendency to hide the situation. But if you talk about it, you need to be gentle: ‘Madam, I see something isn’t normal, have you been circumcised?’ There. And then, you touch on the subject. You can talk about it.

Once women had established a trusting relationship with a health provider, they were more likely to engage in conversations about their care (e.g. birth planning) and, in some cases, were more likely to follow current medical guidelines, for example on issues such as deinfibulation timing.57 Some studies explicitly linked the ability to form good relationships to services that enabled continuity of care:56,202

The women receiving caseload care and those who received more continuity of care from hospital-based midwives spoke of the effort made by midwives to overcome the language barrier. ‘They listened well and took time in trying to explain things’.

Participants in some studies (in the UK in particular) felt that service provision around FGM/C in general seemed to have improved in recent years, and that new models of care with higher levels of provider training and clear referral pathways were providing better care and achieving greater engagement with the affected communities.57,58,168,169,202

Theme 5.2: voicing health-care needs and preferences

This theme presents women’s views, reported in 45 studies, on key elements of good-quality care and appropriate service provision. Women’s recommendations fell into two main domains: interpersonal provider characteristics and service organisation issues.

In terms of providers, women identified the following characteristics and behaviours that, from their perspective, would constitute high-quality care:57,165,166,170,174,175,177–179,181–183,187,188,190–193,196–199,203

• being culturally sensitive
• being respectful
• taking the initiative to raise the topic of FGM/C
• listening and acknowledging women’s needs and preferences
• providing women with detailed information and knowledge, especially around birth choices and options for deinfibulation timing
• knowing about available services and signposting women to these
• encouraging women to ask questions.

In terms of service organisation, women identified the following strategies and approaches that would constitute a high-quality service:47,57,162,165,168,169,175,179,182–184,188–191,196,201,204

• providing appropriate adequately trained interpreters and/or community-liaison workers or advocates
• providing specialist services, including services that address mental health and psychosexual issues
• have staff who are knowledgeable and skilled
• provide staff with education and training to develop both cultural and clinical competencies around FGM/C
• ensure that female health workers are available
• involve communities in awareness raising, service development and delivery
• provide information and awareness raising through a variety of channels, including leaflets, face-to-face discussions, community activities and community health workers.

Summary, reflections and conceptual model of analytical themes

The overall aim of review 1 was to explore the experiences of FGM/C-related health care across the life course for women and girls who have undergone FGM/C. The review findings provide an important account of these experiences through five analytical constructs.

With respect to factors that influence care-seeking, the review shows that access to care is influenced by multiple interlinked factors operating at different levels. Once a woman accesses care, the findings show that care experiences can be both positive and highly negative. Care experiences are affected by the way in which women are treated by health professionals and the nature of the relationship that is achieved with them, and by whether women feel safe or unsafe/vulnerable in relation to provider competence and preparedness of the system to deal with FGM/C. The review shows that both care-seeking and care experiences are strongly affected by two key phenomena, each of which is, in turn, shaped by cultural norms, processes of cultural change and cultural understanding. The first of these is communication, both within communities and between patients and providers. The reviews show how FGM/C is characterised by silence and secrecy. The second is the experience of cultural and/or bodily dissonance and of seeking cultural and bodily integrity that may arise when women encounter health-care situations in Westernised settings. Here, experiences around FGM/C are characterised by stigma, shame and stereotyping. The inter-relationships between women’s experiences and these explanatory phenomena are depicted in a conceptual model (Figure 3). The conceptual model has grouped the analytical constructs relating to disempowering and positive care experiences together under a single heading: ‘care experiences’. Indeed, in some ways, one analytical construct (positive) is the converse of the other (disempowering). However, in the thematic synthesis (see Review 1 themes), we chose to disaggregate these two constructs and to represent them separately. This was a deliberate decision as we felt it was extremely important for women’s disempowering experiences to be made visible and to be analysed and understood in some detail. Only in this way can appropriate corrective action be taken. Merging negative and positive experiences together would have limited our ability to do this.

FIGURE 3 Review 1 conceptual model of analytical themes. Reproduced from Evans et al.139 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/. (Figure not reproduced here; see the original article.)

The CERQual assessment

Appendix 9 provides a detailed summary of findings table, with a CERQual assessment of confidence for each of the above individual descriptive review findings.131 Ten review findings (descriptive themes) have been graded as ‘high confidence’ and seven review findings (descriptive themes) have been graded as ‘moderate confidence’. The main cause for downgrading a review finding was concerns related to methodological limitations; however, these were often offset by the number of studies contributing to a review finding and the consistency with which a finding was reported across varied contexts, settings and cultural groups.

Discussion of review 1

There has been much research documenting the challenges faced by migrant populations in accessing health care in a new country, especially in a maternity care setting (including language barriers, lack of familiarity with the health system, cultural beliefs and health-seeking strategies that may be very different from Western biomedicine, and challenges in forming good relationships with providers).89,93–95,142,212 This review has highlighted all of these issues, but has shown that, when obtaining care for FGM/C-related issues, all of these challenges are exacerbated. Silence, secrecy, stigma and lack of familiarity with FGM/C within the system combine and act as obstacles to identifying FGM/C or to providing women with appropriate care. However, the review has also shown that, in some circumstances, women and providers can overcome these obstacles. Key to this are knowledge of services, community engagement, the availability of specialist services, addressing language barriers and providing care that is person centred, culturally sensitive and respectful.95

The findings from this review are discussed further in Chapter 6, in an integrated discussion section, following a final synthesis in which reviews 1 and 2 are considered together.

Limitations and evidence gaps in review 1

This was an extremely comprehensive review. Nonetheless, there were some limitations. First, the review highlighted several gaps in the evidence base around FGM/C. There were very few studies that focused specifically on mental health needs, hence the findings related to this area lack depth, and the issue would benefit from further research. Decision-making around deinfibulation is another area that would benefit from more specific research [in the UK, a National Institute for Health Research (NIHR) Health Technology Assessment (HTA)-funded study (project number 16/78/04) is currently investigating this issue, and will also explore men’s views and influence on decision-making]. There were no studies that focused specifically on girls and on their experiences. The literature search did not find any in-depth evaluations of interventions or services. This means that development of models of ‘good care’ still needs to be inferred and innovated rather than being based on sound evidence. Second, the review also reflects the methodological limitations of its included studies. Many papers displayed a homogenising tendency in terms of the affected communities as well as FGM/C types. For example, in papers that had mixed community samples, there was little attempt to explore cultural differences in relation to FGM/C. Likewise, it was not always clear which type of FGM/C was being studied. In research with Somali or Sudanese communities, the assumption can reasonably be made that their focus was FGM/C type III. However, in studies with mixed samples, there was very little differentiation on the basis of FGM/C type. As a result, there is limited specific knowledge on the needs or experiences of women with type I, II or IV FGM/C.

Relevance to the UK context

The results of review 1 are derived from studies across many OECD countries. However, of the 57 papers included in review 1, 18 (31.5%) were conducted in the UK. Of these 18, 11 were conducted in the last decade (since 2011) and nine were published within the last 5 years (2013–18).47,174,180–182,196,202,204,205 Of these nine, one was a MSc (master of science) thesis,174 four were research reports47,180–182 and four were peer-reviewed journal papers.196,202,204,205 A subgroup analysis exploring their findings and examining the theme matrix was undertaken of UK studies in general, and particularly of the nine published in the last 5 years. This found that the UK-based studies, including the more recent ones, contributed findings across all of the major themes reported in review 1. Hence, we feel that it is reasonable to conclude that the review 1 findings are generally applicable to the UK context.