Review 2 results

Characteristics of studies in review 2

As described in Chapter 2, 30 papers met the inclusion criteria for review 2. Two studies were reported in multiple publications,56,213–215 hence review 2 includes 28 distinct studies reported in 30 publications. One of the duplicate studies comprised a research report213 and an associated peer-reviewed journal article.56 The report was included in addition to the journal article, as it contained relevant findings that had not been reported in the published paper. The other duplicate study reported different aspects of study findings in two different journal articles.214,215

Of the 28 distinct studies, 19 were unique to review 2 and nine were also included in review 1 (as their samples included patients as well as health professionals).56,78,161,163–165,167–169 Twenty-four of the 30 papers were published in the English language, five were published in Swedish216–220 and one was published in Spanish.221

See Appendix 10 for a detailed summary of study characteristics.

Type of publications

Half of the included papers were peer-reviewed journal articles (n = 15).56,76,79,80,163,167,210,214,215,221–226 In addition, the review included 11 master’s and PhD theses78,161,165,216–220,227–229 and four research reports.164,168,169,213

Date range of studies

The studies represented a mixture of older and more-recent research, with publication dates ranging from 1997 to 2017. However, two-thirds of the papers (n = 20) had been published since 2011, hence the majority of the papers reflected a more contemporary context.

Geographical setting of studies

The studies represented a wide range of OECD countries, covering nine countries in Europe, North America and Australasia. Specifically, review 2 included studies from Australia,76,168,169,214,215 Germany,164 New Zealand,165 Norway,167,210,224 Spain,221 Sweden,79,80,216–220,223,226 Switzerland,161 the UK56,163,213,222,228 and the USA.78,225,227,229 Sweden contributed the most papers to the review (n = 9), followed by the UK (n = 5) and Australia (n = 5). The other countries contributed between one and three papers each.

Sample

As per the inclusion criteria for review 2, the studies all included health professionals in their samples. Some studies focused on a single cadre of health worker whereas others included multiple cadres. The samples were as follows: midwives (n = 9),76,80,214–216,219,221,223,226,228 health visitors (n = 1),222 district nurses (n = 1),218 a mixed group of nurses (n = 1),217 school nurses (n = 1),220 doctors (n = 1)79 and mixed groups of health professionals (n = 14, including doctors from a variety of specialisms, nurses and midwives).161,163–165,168,169,224,227,22956,78,167,210,213,225 Within the 14 ‘mixed’ sample papers, in addition to midwives, nurses and doctors, two studies included counsellors163,224 and four studies included community health and social workers.56,168,169,213,224 There were no studies that included students.

It is notable that only two studies included any kind of mental health professional perspective; however, the findings were not sufficiently differentiated to explore their views as a distinct group.163,224

Focus, context and relevance of studies

The studies had varied research aims and foci. Some focused directly on professionals’ experiences of supporting/managing women who have undergone FGM/C (e.g. Johansen210), whereas others were more indirect (e.g. Lazar et al.225). Some studies focused on care of refugee women in general, but included aspects relating to FGM/C (e.g. Burchill and Pevalin222 and Jatau227). Eleven papers specifically focused on professionals’ experiences with women from countries where infibulation is commonly practised (i.e. women who have experienced type III FGM/C).56,78–80,163,167,210,213,223–225 However, the findings of most of the papers reflected a sense that professionals were often conflating FGM/C in general with type III specifically. Hence, it is our contention that the findings in review 2 are skewed towards health-care professionals’ experiences of, and views on, FGM/C type III.

There were no studies that examined health professionals’ views/experiences of cervical screening for women who have experienced FGM/C. There were also no qualitative studies that explored views on surgical reconstruction following FGM/C. Only one study (of school nurses) focused explicitly on professionals’ views of supporting younger women or girls who had undergone FGM/C.220

As described in Chapter 2, in order to assist development of the initial coding framework, we categorised each of the individual papers according to how relevant their specific focus was to the review aims. Nineteen papers were rated as being of high relevance,76,78–80,161,165,167–169,210,214–218,225,226,228,229 seven papers were rated as being of medium relevance56,213,220,221,223,224,227 and four papers were rated as being of low relevance.163,164,219,222

Methodological quality of included studies

The papers were each appraised by two reviewers using the JBI-QARI138 (see Appendix 11 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, 15 papers were assessed as being of high quality,78–80,161,163,167–169,215,218,222,226,227,229 12 papers were assessed as being of medium quality56,76,164,165,210,214,216,219–221,223,225 and three papers were assessed as being of low quality.213,217,228

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 the lack of discussion of reflexivity (questions 6 and 7 on the JBI-QARI). Given the sensitive nature of FGM/C (or sexuality or migrant health care) as a topic, the failure to explore the researcher’s own theoretical standpoint makes it hard to judge the dependability of the findings.155 Likewise, the researcher’s own professional background may have influenced their viewpoint (e.g. as insiders or outsiders to a profession), their ability to build rapport with their participants or their interpretation of the findings, but this was rarely discussed.

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 Twelve papers were classified as ‘thin’56,163,164,213–220,228 and 18 papers were classified as ‘thick’.76,78–80,161,165,167–169,210,221–227,229 The thicker papers tended to be studies that were informed by an anthropological theoretical approach, that had followed a clear methodology or that had moved beyond mere description in their analysis towards a more interpretive and analytical account of the phenomenon of interest.

As noted in Type of publications, half of the papers were unpublished research reports or master’s and PhD theses (n = 15).78,161,164,165,168,169,213,216–220,227–229 Lack of peer review in these included papers could be considered a potential threat to quality; however, our detailed quality appraisal made it hard to draw any clear conclusions along these lines. For example, 12 out of the 30 papers were ranked as both ‘thick’ and high quality.78–80,161,167–169,222,224,226,227,229 Out of these 12 papers, six (50%) were PhD theses or research reports.78,161,168,169,227,229 However, three of the 30 papers were ranked as low quality and ‘thin’ (two master’s dissertations217,228 and one research report213).

Review 2 themes

The findings from the 30 papers in review 2 have been synthesised into six analytical themes, which, in turn, represent a synthesis and interpretive analysis of 20 descriptive themes (Table 8). The analytical themes were shaped to directly illuminate the objectives of the review, which were to explore health professionals’ perspectives on the factors that influence appropriate service provision, communication and quality of care for FGM/C-affected women/girls in different health-care settings.

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 12) that shows which studies have contributed findings to each theme. Hence, we will 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: knowledge and training

For health providers, feeling confident and able to deliver appropriate FGM/C-related care is strongly linked to having adequate knowledge and skills. The review found that providers want and need the right knowledge and skills to provide appropriate FGM/C-related care and felt that there was a lack of knowledge (or variable knowledge) around FGM/C. This includes knowledge of sociocultural and legal aspects of the practice as well as clinical knowledge. A lack of knowledge could lead to missed opportunities for discussing FGM/C, poor interpersonal care and poor clinical management, as described in later themes. It also contributed to provider anxiety and stress when having to deal with situations in which they did not feel confident or competent. Many studies reported a desire for more education and training, citing a perception that there is a lack of (or insufficiently in-depth) basic pre-registration training and continuing professional development (CPD).

Theme 1.1: knowledge and awareness

Professionals had variable knowledge around FGM/C, depending on the practitioner’s work setting, role, exposure to FGM/C and exposure to training. This theme was reported in 25 studies. Many studies described a lack of provider awareness around FGM/C or provider reports of having insufficient, inaccurate or partial knowledge and skills (especially around deinfibulation), leading to misconceptions, lack of awareness, fear and uncertainty about how to talk about FGM/C and how best to support women with FGM/C:

. . . midwives also described having ‘mini panic attacks’ when they saw the sticker on the women’s notes indicating that they had FGM/C, as they felt that their practice was inadequate. Midwives also stated that they did not have enough experience to identify FGM/C, saying it was not always ‘clear-cut’ to classify.

This finding was reported among medical as well as nursing and midwifery staff. Several studies noted that providers may lack knowledge around differentiating the different types of FGM/C (particularly types I and II).76,164,217 In addition, providers had many questions (especially around cultural aspects, sex and sexuality) that they were hesitant to ask because of concerns about appearing culturally insensitive.217

Providers linked being knowledgeable to being aware that FGM/C was a potential issue for a woman, being more confident in discussing FGM/C with women, being able to understand women’s cultures or experiences better, being more confident in providing appropriate care and having greater job satisfaction. Providers also recognised a need for specific knowledge related to clinical management, cultural meanings and the legal context.

Theme 1.2: education and training

Professionals in 21 studies identified a perceived need for greater education and training in all aspects associated with the management of women and girls with FGM/C, and that training would greatly enhance provider confidence.222 Health providers identified a lack of basic (pre-service) education (or an input that was too brief and superficial)76,78,80,165,167,168,214,216,219,221,225,227,228 and a need for regular CPD around FGM/C that included in-depth information, practical skill development and access to mentorship and clinical supervision where relevant. In the absence of training, health provider perceptions and practices were based on personal experiences, consulting colleagues, self-study or information from the media. Some studies emphasised a view that training must cover all aspects of FGM/C (e.g. communication, sexual and cultural issues), as well as medical aspects so that cultural competence as well as clinical competence was improved; this need was expressed by providers from ‘high-prevalence’ and as well as ‘low-prevalence’ settings.169

Analytical theme 2: communication is key

Providers reported multiple challenges in talking about FGM/C with women but recognised that good communication was key to providing good-quality care. Language barriers were reported as a significant hindrance to effective communication. Use of interpreters was a common intervention but posed a number of challenges. In addition to the language barrier, the nature of FGM/C as a taboo, sensitive and specialised topic, was seen to add another layer of complexity. Communication problems led both providers and women to avoid the topic of FGM/C, thereby hindering the identification of FGM/C. Communication challenges also led to difficulties in forming quality, trusting relationships with women and providing women with appropriate information and choice about their care. This analytical theme has three constitutive descriptive themes.

Theme 2.1: language barriers and interpretation challenges

This theme, reported in 20 studies, relates to language barriers that affect communication and relationship building between professionals and patients and the challenges that providers experience when addressing this by working through interpreters. The studies showed that language barriers were an issue that could significantly compromise care:

They don’t know that much about their bodies at all. It takes a very long time to explain . . . in an easy way . . . And you have the same amount of time as for any well-informed Swedish patient . . . You have to lower the bar. [Obstetricians]

Language was particularly an issue with women who were still relatively recent migrants. The language barrier affected providers’ ability to elicit in-depth information from women or to provide in-depth explanations and engage in shared decision-making. Moreover, the language barrier deterred providers from asking questions about FGM/C at all, as it was seen to be too difficult to try and address such a sensitive topic requiring specialist vocabulary in a short consultation:

And you see it and, what do you do? Ask them about it? When it’s already too late to do anything about it? ‘You don’t understand, communication is terrible enough without having to talk about FGM/C as well’; ‘It is very difficult to address this matter given the communication issues’ [Midwives].

Use of interpreters was variable and inconsistent.56,76,79,80,161,168,169,213,218,220,225,228,229 Some providers preferred to rely on informal interpreters who women would bring with them. However, others expressed concern about maintaining women’s confidentiality given that communities could be tightly knit, and about women’s abilities to open up honestly in front of known family/community members (especially if their husband was acting as an interpreter).56,168,169,213,220,225,229 Providers also had concerns about the accuracy and quality of interpretation (both with formal and informal interpreters) given the specialist nature of FGM/C, the niche vocabulary and the sensitivity of the topic:56,168,169,213,220,229

I’ve actually had interpreters who don’t exactly say what we say and sort of side with the family . . . because they think we’re trying to do something that’s a problem – you have no idea what they’re saying . . . [Female OB/GYN resident]

Providers experienced various challenges in using formal interpretation services. First, it could be difficult to predict when women were attending, hence interpreters were not booked in advance, leading to long waits. For these reasons, providers would often fall back on the use of informal interpreters. Pre-booking interpreters was time-consuming or difficult to predict, hence was often not done. Telephone interpretation was seen as particularly challenging owing to the impersonal nature of it when trying to discuss sensitive issues.56,76,169,213 Providers noted particular difficulties when interpreters were male, as this would make both the interpreter and the woman uncomfortable:

A midwife described feeling uncomfortable and that women were embarrassed when male interpreters were assigned, as female interpreters were often unavailable.

Time constraints were also cited as obstacles to using an interpreter, as interpretation inevitably lengthened the consultation time, yet providers were often not given additional time. Finally, using formal interpretation services affected the provider’s ability to establish continuity of care, as a different interpreter might be available each time. Some studies noted that staff had not received adequate training or support in using interpreters:56,76,168,169,213

You don’t have time with all the interpreter situations . . . So the care they receive is definitely not as good, that’s for certain . . . and you can miss an incredible amount because of that, and maybe miss that it’s not a normal pregnancy. [Obstetricians]

Theme 2.2: talking about a sensitive issue

This theme, reported by 24 studies, refers to the sensitive and taboo nature of FGM/C owing to its association with sex, sexuality and ‘private parts’. The nature of the topic compounded potential language barriers and made FGM/C hard to talk about, even when a language barrier was not present.

Some health providers viewed FGM/C as a highly sensitive topic and did not want to offend or stigmatise women or girls. They felt awkward or fearful to broach the issue and felt that women/girls may experience questions as intrusive and that discussing such matters might jeopardise their relationships.76,80,169,210,217,218,220,221,225 Hence, in order to be culturally sensitive or non-judgemental, some health providers would not ask about FGM/C at all, assuming that women would raise the issue if there was a problem. This hindered communication and could lead to the topic not being discussed at all, hence opportunities for timely interventions could be missed:

There are circumstances where a patient will ask questions and somehow open the door for me and then I feel more comfortable, but I don’t really know how to communicate about that effectively . . . (Nurse-Midwife)

I guess my biggest fear is coming across really judgmental. I don’t want to hurt a woman’s feelings during an exam . . . So I feel like that’s a real deficit. (Nurse-Midwife)

Some health providers noted that every woman was different and communication strategies had to be tailored accordingly.76,216,228 Others emphasised the importance of using and being attentive to non-verbal communication to guide them as to when and how to discuss sensitive issues.216,228 Some health providers noted that communication was a process (e.g. the topic may need to be addressed several times over different consultations) and relied on being able to develop a trusting relationships with clients – which, in turn, was facilitated by practises such as continuity of care or by having sufficient time in consultations.56,213,218,220,227 Some health providers felt that it was best to ask openly and directly about FGM/C.219 Direct communication was considered easier if it was seen to be part of a routine process in a consultation (e.g. a standard question on an assessment form).169,220,222,223,228 Experience and training were noted to improve health provider’s confidence in addressing FGM/C:219,220,222,223

The female genital mutilation is a very difficult one . . . I have had clients with that and it’s asking the question . . . I found that the few people that I did ask quite often had had it – when asked they were very open about it. [Health Visitor]

Theme 2.3: women also find female genital mutilation/cutting hard to talk about

Thirteen studies reported provider’s views that women rarely proactively mentioned FGM/C in the context of a consultation.76,78,161,165,167–169,215,217,220,223,225,229 Providers attributed this to cultural taboos within women’s own societies, feeling ashamed and embarrassed or being fearful of being judged.161

Analytical theme 3: encountering the ‘other’ in clinical practice – negotiating cultural dissonance and achieving cultural understanding

The health-care encounter between professionals and FGM/C-affected women was a site where different cultures and values met and needed to be negotiated. Cross-cultural encounters evoked emotional reactions that affected professional behaviour and interpersonal processes, as well as requiring adjustments to practical aspects of service provision (e.g. responding to women’s preferences for a female provider or interpreter). Achieving cultural understanding and mutual respect led to culturally appropriate care provision. When this was not achieved, quality of care was compromised.

Studies showed that cultural differences were directly related to the practice of FGM/C but also indirectly to more generic issues found when working with patients from different backgrounds and countries. It was evident that many professionals (especially midwives) valued and endeavoured to provide culturally sensitive care, and attempted to deliver this by adopting a non-judgemental and person-centred approach. These professional behaviours were linked to the potential for better-quality care and a greater likelihood of optimal clinical outcomes. However, in other cases, cultural dissonance could cause frustration on both sides and resulted in situations in which professionals and communities struggled to exert control within the health-care encounter and failed to communicate. The consequences could be provider stress, suboptimal clinical outcomes and traumatic experiences for women. Achieving a good relationship between health providers, women and communities affected by FGM/C required cross-cultural understanding, sensitivity to cultural difference and trust. In addition, cultural preferences related to the gender of the provider were important in enabling or hindering the development of a trusting relationship.

Theme 3.1: attitudes towards female genital mutilation/cutting – mixed emotions

This theme was reported by 17 studies, and describes provider views and attitudes around FGM/C. Many providers expressed strong emotions around FGM/C, including shock, disgust and horror. It exemplified a huge cultural difference, with providers describing women’s bodies after FGM/C as different, not ‘normal’ and mutilated. At the same time, providers (especially midwives and nurses) expressed great empathy and sympathy for the women, and tried to be supportive.76,216,217 Women were often talked about as victims of cultures that were violent, barbaric and patriarchal. Some providers mentioned a struggle to maintain their professionalism around this topic, having to hide their feelings of horror when they first encountered FGM/C. They also expressed anger towards the ‘other’ society and particularly towards the men in that society:

As a woman yourself, you kind of feel . . . a sorrow . . . It is difficult, because you’re so angry. You get so . . . get enraged at the whole situation, at the whole culture . . . how the hell can they subject women to that . . . I become furious at men . . . I try not to show it. [Midwives]

However, some studies reported views of providers who were widely travelled and who, through experience, had developed a more nuanced and culturally relative position, in which FGM/C was seen as a practice that is different, but that needed to be understood in its own context.78,229

Theme 3.2: cultural dissonance – control and resistance in clinical encounters

This theme, reported in 20 studies, refers to cultural differences between health providers and patients, and to cultural assumptions and stereotypes that may exist and that may affect care by undermining trust and communication. In many of the papers, providers seemed to be referring to their experiences with Somali patients in particular.

In some studies, providers reflected that they, as health professionals, sometimes held stereotyped views, particularly of Somali FGM/C-affected women, which may affect their care (e.g. assumptions that Somali women were ‘tough’ and did not require or want pain relief during labour), hence failing to see women as individuals, especially when there was a language barrier.56,78–80,219,220,225–227,229

Conversely, there was a widespread sense that Somali patients in particular did not trust the Western health-care system and held fears and assumptions about what may happen to them:

I think they come in with some preconceived notions as well – that we’re forcing health care on them (Female nurse practitioner) . . .

The bigger problem is the belief in the community that we’re somehow not acting in their best interest . . . it’s mistrust. I think they think we’re trying to hurt them. I don’t know why. I wish it wasn’t there. (Male OB/GYN)

The studies indicated that key areas of cultural difference manifested in differences in views around pain behaviour, caesarean sections, episiotomies/deinfibulation, vaginal examinations (e.g. pap smears)227 and other clinical interventions. The caesarean section was a particular matter of contestation and resistance, with providers across multiple studies reporting women’s and families’ resistance to this procedure even when medically indicated.56,78,79,210,219,225–227,229 Providers felt that this was due to religious reasons, ‘ignorance’ or cultural preferences for natural childbirth, but also owing to fears that providers would opt for a caesarean section as a way of managing the FGM/C. Many studies reported examples in which providers became perplexed and frustrated that patients did not follow their advice. Such encounters could become highly charged, with different stakeholders (providers, women and families) all seeking to exert control over the clinical situation.78

The studies provided several examples of situations that were not well managed, leading to resistance, misunderstandings, miscommunication and poor clinical outcomes (such as women being denied pain relief, enduring traumatic births, refusing to have a caesarean section where it was indicated, or where providers imposed a caesarean section without proper informed consent and explanation).78,167,210,225,229 One in-depth anthropological study in particular (of Somali women and providers in a maternity setting in Norway) provides many examples of the miscommunication and misunderstandings that can happen as a result of a provider’s lack of cultural understanding and assumptions about the Somali community.210 However, this and other studies also provide examples showing that, when care was taken to build trust and mutual understanding, clinical situations could become easier to manage.167,227

Theme 3.3: acknowledging the role of the family

This theme, reported by 15 studies, refers to the significant role of the family in influencing women’s decision-making and actions, in contrast to ‘Western’ patients for whom care decisions are more often made on an individual basis. Providers recognised that women’s health-care decisions and behaviours were strongly influenced by their husbands and wider family.76,78–80,161,215,218,226 This was, at times, experienced as frustrating, but involvement of the family was seen as important for effective communication and effective care:

. . . it’s the influence the men have over the women [that] is very difficult for us to understand, because again if a Somali woman is there . . . I want her opinion, I don’t want his opinion . . . a lot of times they’ll just look to the side and you have to talk to somebody else. (Female OB/GYN resident)

However, one study from Sweden reported that providers often held assumptions about gender relations and the role of men in influencing women’s health-care decisions, often assuming men to have a negative influence, and reporting surprise when they encountered husband–wife relationships that appeared supportive and caring, or where the men clearly opposed FGM/C.226

With respect to FGM/C specifically, family involvement was seen to be particularly crucial in decision-making in relation to deinfibulation timing76,228 and reinfibulation:76,80,161,210

One midwife described the influence of an older woman on the decision to have a de-infibulation prior to birth, citing that ‘their mother or aunty said no’.

Theme 3.4: gender of the provider

This theme, reported in eight studies, relates to how the provider’s gender influences the care of women with FGM/C. The studies reported a strong perception that women from FGM/C-affected communities preferred to be seen by a female health professional and that a provider’s ability to form an open and trusting relationship with their patients was more likely if they were female.78,80,161,169,215,218,221,227 The gender of the provider was said to affect women’s willingness to seek help, to talk openly to the practitioner and, finally, to be examined (so that even if the problem had been disclosed, a patient may refuse further examination if the practitioner was male).215 Knowing patients’ discomfort with male providers could also make male professionals reluctant to raise the issue of FGM/C at all.161 Midwives and nurses in particular felt that being female helped them to build rapport with their patients:221

In this matter, female midwives are best because the women completely refuse to be seen by men. There is a complete gender-based affinity between women [Female midwife].

Theme 3.5: crossing the cultural divide – strategies and elements of culturally sensitive care

This theme, reported in 23 studies, refers to strategies and outlooks that were adopted by providers in their endeavours to ‘cross cultural divides’. It was evident that many providers tried hard to be culturally sensitive and saw this as an essential aspect of their professional identity and practice. Hence, many papers described strategies and approaches that providers felt were important to build good relationships with FGM/C-affected women and, thus, to provide appropriate care. A good relationship was seen to be founded on trust, and this, in turn, rested on open communication.228

In addition, study participants noted the importance of understanding FGM/C in the context of women’s wider non-health-care needs and culture (i.e. being person centred as well as ‘culturally’ sensitive), and having time to build rapport.161,164,168,169,217,219,220,225,229

Additional prerequisites to the development of good patient–provider relationships were having good knowledge about FGM/C,216 sufficient time, continuity of care,169,213,227 managing language barriers, the importance of having a non-judgemental and open attitude, and the involvement of family:76,215

So I’m not treating them as ‘like this is bad’ [focus group discussion (FGD) 4] . . . Once you’ve built up a rapport, the information that you get from these women is amazing and you talk about sex with them and they answer the questions easily (FGD 3).

In one hospital ‘very enthusiastic and very client-focused’ medical liaison officers were described as an important part of developing rapport with women (FGD 3).

Finally, midwives in several studies noted that providing culturally sensitive care included avoiding making assumptions and stereotyping, and treating each woman as an individual.76,192,215,219,228 Culturally sensitive care was particularly discussed by midwives and nurses.

Analytical theme 4: identifying female genital mutilation/cutting

A key review finding was that appropriate identification of FGM/C is a ‘hit and miss’ process dependent on individual provider behaviour as well as the existence (or not) of relevant organisational systems and processes. The timely and appropriate identification of FGM/C was dependent on individual providers recognising FGM/C as a potentially relevant health issue regardless of how and when women presented to care, feeling confident to ask women about FGM/C and subsequently having processes and procedures in place to enable women to access appropriate care. The studies suggested that these aspects varied according to a provider’s role and clinical setting. Identification of FGM/C was also related to whether or not there were organisational systems and processes in place to prompt practitioners to ask about FGM/C and to record and act on that information in a systematic way, with considerable variability being reported across settings.

Theme 4.1: presentation and help seeking

In this theme, providers in 15 studies reported a range of experiences in how women presented to services and how they might identify FGM/C. Some, especially in lower-prevalence areas, felt that they had encountered it only rarely,79,80,164,165,168,169,216,218,220,221 whereas others who worked in locations with large migrant populations were more familiar.169,215,217,219 There was a feeling that women primarily sought medical help only once symptomatic or for pregnancy. Even then, women may not make a connection between their symptoms (e.g. frequent urinary tract infections) and their FGM/C:161,163,164,218,229

I see many women coming to me with infections, obviously I know why it has happened, because they are not allowed to heal before they have sex. However, none of the women will ever believe that that is the reason for it. It’s very frustrating.

As a result, given that many medical procedures and consultations do not require physical examination, providers felt that FGM/C may not be identified at all unless they specifically asked.161,163,164,169,218,219,229 However, one study with midwives in Spain221 noted that FGM/C could be missed even in an examination unless providers had been specifically trained to look out for it:

’I have never seen a case:’

‘Me neither:’

‘We don’t see that here:’

‘When you examine a women it doesn’t occur to you to look at the clitoris. I have never seen a case, although I have seen women from countries where it is practiced’ [Midwives].

Likewise, some studies noted that it could be particularly hard to identify type I or type II FGM/C during examination and that this might account for apparently ‘low’ rates of identification.76,79,80,161,169

Another study,159 in which a doctor who worked in a refugee health centre in Australia was interviewed, noted that the cervical cancer screening presented a good opportunity to identify FGM/C; however, this practitioner did not appear to routinely address the issue in this context.169

A few studies mentioned a view that younger women may be becoming more ‘bold’ in seeking out care to alleviate their symptoms.161,216,220 For example, a Swiss study161 described doctors from family planning centres noticing that young women were increasingly coming to them to request help for problems related to FGM/C.161

In general, the studies consistently noted that it was the provider who needed to take the initiative to ask about FGM/C and that women may be reluctant to raise the subject of FGM/C themselves.79,80,163 However, there were exceptions, namely when there were specialist services or experienced providers available, who women might seek out themselves via personal recommendations or on the advice of friends/family:76,164,169,218

I can tell when women turn up at my clinic and I’ve never met them before but they know me, and they know where I’m from and they know it’s because they’ve been recommended by somebody, or we’ve been recommended by somebody. Word of mouth is a really powerful recommendation.

The main focus of the papers reporting on this theme was on the maternity context. It is unclear to what extent providers in other settings saw it as their responsibility to consider FGM/C. However, a study of school nurses in Sweden reported that school nursing education sessions proved to be a useful way of encouraging girls to come forward to discuss their FGM/C.220 Likewise, a study with health visitors in England also showed that they were able to identify and support women with FGM/C through their routine interactions outside the maternity context.222 In contrast, GPs in an Australian study did not see identification of FGM/C as part of their role or as necessary unless there was a medical problem.169

Theme 4.2: practices and processes around identifying female genital mutilation/cutting

Twenty studies across many contexts indicated that the presence of organisational and system-related mechanisms to identify FGM/C was variable, and that practices could be inconsistent and unco-ordinated. They argued that a lack of knowledge of the procedures and protocols for the management for obstetric care for women with FGM/C was a substantial challenge to the provision of culturally appropriate care. They described that use of guidelines was ‘ad hoc’.228

There was a general agreement among providers that, especially for pregnant women, FGM/C should be identified antenatally where possible but this did not always happen.79,80,169,228 As indicated in Theme 4.1: presentation and help seeking, a key barrier to early and appropriate identification of FGM/C was that providers did not ask about FGM/C. However, several studies identified that organisational systems and processes were often not adequately set up to prompt them to ask or to ensure that follow-up would then take place. Organisational and system-related barriers to FGM/C identification were related to (1) the existence (or not) of clear guidelines, procedures, referral pathways56,76,79,80,167,169,215,216,218,221 and record-keeping processes,56,76,79,167,218,221,228 (2) clarity of roles and responsibilities and (3) the need for communication/co-ordination between organisational units and professional groups.78,79,161,167,218 For example, some studies reported a confusion between community clinics and hospital inpatient centres over whose responsibility it was to record FGM/C and to provide counselling and care planning.79,167 As a result, examinations of women and care planning might not happen. One study from Sweden79 described how there was no consensus among doctors regarding how and when women with FGM/C should be informed of deinfibulation options, what information they needed or how best to convey information between antenatal clinics and the hospital:

It was assumed that the ANC-midwives [antenatal care midwives] write necessary information in the notes carried by the patient, although there seemed to be no standard for what information should be included.

Other studies reported a lack of record-keeping,56,76,79,167,218,221,228 so that FGM/C failed to be recorded on the relevant medical notes and then failed to be discussed further during subsequent consultations.225 For pregnant women, this could lead to situations in which women arrived at the labour ward with no prior counselling regarding their FGM/C:76,225

It is hugely dreadful when you have to do an anterior episiotomy with somebody who’s transitional . . . , who’s just walked in, in that state; there’s no counselling around that. So you are actually doing a procedure that is very uncomfortable because you cannot rationalise with the woman in that state.

A unique care plan was seen by several midwives to be a useful way forward (FGD 4). Without this information, they admitted they felt very unprepared.

However, even when procedures were in place, one study with midwives in Australia identified several reasons why they might not always be followed.76 These related to lack of time, a feeling that additional reporting created overly burdensome bureaucracy that was hard to fit into existing work routines and a lack of understanding of how the systems worked:

Time pressures and lack of experience were seen as barriers to data collection . . . In one hospital, labels were placed on women’s files to indicate FGM. This was entered onto the computer under an alert function. However, one midwife admitted that these were not properly assessed by staff.

Some midwives were aware of where they could record FGM on the database under ‘other surgeries’ but felt that it was often missed and that FGM needed its own indicator, or a ‘direct question’ for clarity. Participants were not supportive of additional forms, as there were too many already.

Analytical theme 5: clinical management practices – inconsistent and variable

The review found that clinical management of FGM/C can be variable and inconsistent dependent on individual provider knowledge and skills, as well as the existence (or not) of relevant clinical guidelines. Although some providers expressed confidence in managing clinical interventions around FGM/C, many of the studies identified uncertainty in terms of good practice and highlighted inconsistencies in clinical practice, including with regard to psychological care. The inconsistency was linked to a perceived lack of clinical guidelines, meaning that the care provided to women could be variable, depending on the experience, confidence and preferences of individual practitioners. Many findings contributing to this theme came from studies looking specifically at obstetric care for women with type III FGM/C and to clinical management practices around deinfibulation and reinfibulation.

Theme 5.1: deinfibulation timing

This theme, reported in eight studies, concerns professionals’ views on the timing of deinfibulation for women with type III FGM/C. The majority of providers felt that women preferred deinfibulation to be carried out in the second stage of labour (rather than antenatally) to avoid having to be cut twice. In contrast, most providers would have preferred to undertake deinfibulation antenatally (although some felt that this might be an unnecessary additional trauma for the woman), but the usual practice seemed to be deinfibulation in the second stage of labour, as the baby’s head is crowning.76,79,80,161,167,169,215,228

In studies specifically of midwives, it was emphasised that, ideally, decision-making around deinfibulation should be a ‘shared’ process taking place as a result of discussions and counselling between providers and women during the antenatal period;76,215,228 however, this did not always happen.79,80,167,169,228 A UK study228 noted that discussions with women about defibulation should include asking them when they would like it to be carried out. Participants in the study noted that midwives should discuss the feasibility of women’s requests and should note the woman’s wishes for intervention and pain relief.228 In some studies, providers noted that women’s decisions around deinfibulation timing were influenced by family members, especially older women.76,228

Theme 5.2: deinfibulation practice

With regard to deinfibulation, findings reported from 21 studies revealed that providers’ confidence, competence and experience around the procedure varied considerably depending on the professional group, training and setting. Hence, the care that women received could be variable depending on whose care they happened to fall under. Several studies noted that midwives in particular could be anxious and uncertain about deinfibulation:56,76,78,80,168,169,215,217,219

Having done the anterior episiotomy, my biggest fear is having to do a lateral episiotomy as well. We’ve had one occasion where we did have to do that. It felt like we’d mutilated that woman even further (FDG 2).

Other participants were worried about undertaking clinical procedures that they were not confident with . . . ’I had to actually do an anterior episiotomy on her. I found that very unnerving to actually have to cut upwards . . . The fear is how far is it going to extend and what it’s going to do’.

Two studies, both involving midwives, highlighted uncertainty about how best, and to what extent, to suture and manage the perineum following deinfibulation.80,210 In another study, a midwife described how, with experience, deinfibulation became a normal routine procedure.78

Midwives in an Australian study76 described how support from a FGM/C specialist midwife was perceived as extremely helpful in alleviating their anxiety:

In one hospital, midwives said they received referrals from a midwife with specialist training with the women’s history and suggestions for care (FDG 4).

Studies that included medical practitioners generally indicated a higher level of professional confidence, even when formal training had not been received:78,79,165,167,225

I think they can muddle through it (circumcision management) . . . I think we do OK with that . . . we do a pretty good job with our education in general . . . and in making those kind of decisions (Male OB/GYN).

Several studies nonetheless identified inconsistencies in medical practice regarding deinfibulation:76,79,80,161,167

Different suggestions were given for [management of] infibulated women. Most . . . doctors advocated defibulation with care taken to protect underlying anatomical structures, sometimes accompanied with a medio-lateral episiotomy. Others suggested a medio-lateral episiotomy only, thus recommending the same procedure as with non-infibulated women.

Furthermore, three studies reported that doctors were sometimes quick to decide to recommend a caesarean section, owing to uncertainty or lack of experience, and especially when this was compounded by difficulties in being able to undertake routine monitoring in labour:78,79,167

It’s like going back [in time] a bit . . . You’re nervous since you’re not in control and you can’t check . . . that labour progresses as it should . . . there is always the question if you should cut it up [the infibulation] or if you should do a caesarean section straight away without knowing anything . . .

One study highlighted how decision-making around deinfibulation could also be influenced by practitioners’ assumptions about women’s preferences based on cultural stereotypes rather than discussing the issue with them.210 In a study conducted among midwives in Norway,210 midwives knew that infibulation was of cultural importance to the Somali community. They therefore assumed that Somali women wanted to remain infibulated. Hence, in an attempt to be culturally sensitive, some midwives reported undertaking extensive episiotomies rather than deinfibulation:

‘Therefore, I just made episiotomies, to avoid tears in front.’ . . . When asked whether she had considered that Amina might have wanted defibulation, Katrine replied in surprise: ‘No! Of course she wants to remain the way she is.’

Finally, five studies of midwives noted that it was important to provide women with counselling and in-depth information after deinfibulation so that they could adjust to an altered body image and altered physical sensations.76,167,215,217,228

Theme 5.3: reinfibulation ambivalence

With respect to reinfibulation, findings from 11 studies demonstrated that professionals’ attitudes towards reinfibulation could be ambivalent, and that their practice relating to reinfibulation was variable.

In general, health practitioners were clear that reinfibulation was illegal and should not be carried out. However, in three studies, practitioners reported having undertaken some degree of reinfibulation161,167,210 (but it should be noted that these were all old studies and may no longer reflect current practice).

Although knowing that reinfibulation was illegal, some midwives felt unsure about the detail of FGM/C and the law; therefore, they were unsure about how to best explain the issue in a culturally sensitive way when requested.214,215 However, where there was clarity on the law, it was perceived to be a helpful way of supporting practitioners in explaining why they were refusing reinfibulation.80,228

Although reinfibulation was known to be illegal, several studies reported that practitioners sometimes felt ambivalence and a moral dilemma about refusing to reinfibulate a client if she was clearly requesting it, and felt that it should be done. Refusing a patient’s request was seen to contradict the principles of person-centred care. These practitioners worried that refusing reinfibulation may cause harm in terms of causing marital problems for women and their husbands or may cause women distress in terms of adjusting to an altered body image.76,79,80,161,167,168,210,214,215,219,224

Several studies highlighted the important role of husbands in decision-making around reinfibulation (this varied in terms of requesting it or not wanting it for their wives) and, where appropriate, of the benefit of involving them in women’s care.76,80,210,226

Theme 5.4: need for guidelines

Fifteen studies reported a lack of (or lack of awareness of) clinical guidelines that would help to establish clarity and consistency of practice around deinfibulation timing, procedure and reinfibulation:

Rather than referring to scientific reasoning and professional guidance, the doctors instead seemed to rely largely on personal knowledge, values and experiences when reasoning about their practice.

None of the clinical sites where study participants worked had formal protocols on the management of circumcised women. One participant mentioned that they had considered adopting a protocol to address requests for reinfibulation . . . however, the protocol was never created.

Where guidance existed, it was perceived to be highly useful.169,228

Theme 5.5: psychological issues

Twelve studies reported providers’ experiences that FGM/C could evoke painful and difficult psychological responses in women at any life stage, and some practitioners emphasised the importance of offering counselling and psychological support.76,215–217 Interestingly, these aspects were mainly mentioned by nurses/midwives, and the studies throughout the review in general gave most prominence to physical rather than psychological aspects of women’s care. Although recognised as a need, in most of the studies reporting this theme the actual availability of counselling or psychological support as a routine part of care was not clear.168,217

Clinical interventions in particular were recognised as potentially traumatic for women in terms of inducing flashbacks from the original procedure, heightening pain and, in the context of birth, sometimes leading to difficult deliveries. In a maternity context, several studies noted a need to be extra attentive to information giving and counselling in the antenatal period and to pain management during labour and perineal suturing to try and mitigate emotional distress.56,76,164,167,210,215,217 However, dealing with these situations could also be emotionally challenging for the providers:76,167,210,215

This lady had a small tear . . . and I was actually stitching her up . . . And she was crying and crying, and afterwards I said, ‘Are you OK,’ but she told me it brought back all those memories, you know, being sewn up before. So that was distressing, how she felt. (Midwife 6)

Analytical theme 6: optimal service development for female genital mutilation/cutting care

This theme relates to service development and perceived service gaps related to FGM/C prevention and care. The studies identified a perceived need for service development in three interlinked areas: (1) community engagement, (2) prevention and (3) specialist service provision. The studies identified variable engagement of providers in addressing FGM/C prevention on an individual level, but there was strong support for the development of specialist holistically focused services that would cover FGM/C care as well as prevention. Providers saw community engagement as essential for prevention as well as for raising awareness of, and trust in, services.

Theme 6.1: provider’s role in prevention

Apart from school nurses, whose role explicitly encompasses safeguarding and sexual health for children/teenagers,217,220,224 relatively few studies reported practitioners addressing FGM/C prevention (either directly with young people or indirectly via discussions with mothers/families) as part of their practice, although several studies reported that this should be part of any practitioners’ role, including GPs.76,161,164,167,217,219,220 As a result, prevention discussions appeared to take place in an ad hoc way (dependent on individual providers) rather than as a routinised aspect of care. This theme was reported in 13 studies.76,80,161,164,167,168,217–220,224,226,228 Ten of these related to prevention discussions with women/families,76,80,161,164,167,168,218,219,226,228 and three (specific to school nurses) included findings regarding FGM/C discussions directly with young people.217,220,224

Some key barriers to initiating prevention discussions in a clinical setting were identified in six studies (but several of these are now rather old).76,80,161,167,219,226 These included lack of time, inappropriate timing (referring to the difficulty of having a prevention discussion when a woman was in labour or had just given birth), feeling that the prevention discussion is someone else’s responsibility, not having enough knowledge or confidence, feeling unsure if women’s responses could be trusted, lack of privacy (e.g. if family members were present) and language barriers.

School nurses did report having discussions with young people about prevention, although it was described as a sensitive and difficult topic to address.217,220,224 Nurses in one study220 reported that discussions were easier if it was possible to speak to the young people alone. One study highlighted that school health practitioners were perhaps overly focused on discussing the clinical or legal aspects of FGM/C and a different approach might be to address sexual/relational concerns and impacts with young people and that this approach might engage them more.224 For example, in a study from Norway,224 a school nurse described how she ran discussion groups for youth on FGM/C:

When asked whether sexual concerns and the motivation for FGM/C were topics for reflection and discussion in her groups, she was surprised by her own omission. She simply had not considered these topics. Her focus had been on the law and the health risks associated with FGM/C.

Theme 6.2: community education and engagement

This theme, reported by 11 studies, refers to provider views on community engagement and education. Practitioners identified a need for greater education and awareness raising among affected communities, both on FGM/C itself and associated services but also on prevention.76,161,164,165,168,169,217,219,220,224,228 They suggested that this should include men/boys as well as women/girls. Providers also identified a need for better information resources for communities.76,161,217,220 Practitioners suggested that community engagement needed to be built on relationships of trust and concern for wider community needs (not just FGM/C) and some suggested that community outreach/liaison roles might be beneficial.76,168,169

Theme 6.3: specialist services

This theme refers to a perceived need for specialist services. Nine studies identified that providers valued and recommended having specialist centres for FGM/C management where women could be referred and where expertise, advice and training could be accessed.165

Such specialist centres were seen as a particularly important potential link to communities, in terms of building trust and working together with community outreach workers and trained interpreters:76,223

At some units, particularly at family health centers, midwives worked in networks with social workers, health-care professionals, and bi-lingual health advisors of Somali origin. They felt this created a more holistic approach.

In addition, the need for additional counselling services was highlighted by some studies.76,161,217 Having access to specialist centres was seen as particularly important for practitioners in low-prevalence or rural areas.165,168,169,228 Finally, four studies stressed the importance of ensuring equity of service provision, especially across lower-prevalence or rural areas.165,168,169,228

Summary and conceptual model of analytical themes

Review 2 shows that providers’ ability to appropriately identify FGM/C, to provide appropriate clinical and psychological care and to engage in prevention discussions depends on individual provider characteristics, such as knowledge, clinical skills, cultural understanding and communication skills. However, it also requires clear organisational systems, processes and guidelines that support providers to ask the right questions and offer correct care and follow-up, including having systems in place to address language barriers and sufficient time (or continuity of care models) to build relationships with women and their significant others. Particular consideration may be needed for service configuration in low-prevalence settings, where providers appreciate specialist support. These inter-relationships are depicted in Figure 4.

FIGURE 4 Review 2 conceptual model of analytical themes. (Figure not reproduced here; see the original article.)

The CERQual assessment

Appendix 13 presents a summary of findings table with a CERQual assessment of confidence for each individual descriptive review finding.131 Eight review findings (descriptive themes) have been graded as ‘high confidence’, 11 have been graded as ‘moderate confidence’ and one as ‘low confidence’. The main causes of downgrading a review finding were concerns related to methodological limitations and coherence (in some cases, not all studies reported all aspects of a review finding). In addition, several findings had moderate concerns related to ‘adequacy’ in terms of having relatively ‘thin’ data contributing to a finding. However, most findings were relevant across professional group, contexts and countries.

Discussion of review 2

There has been much research documenting the challenges faced by health providers in destination countries in delivering health care to migrant populations in a context of super-diversity (e.g. language barriers, cultural differences and lack of time to manage complex patient needs).85,86,89–91,230 As with review 1, this review has highlighted all of these issues, and has shown that, when delivering care related to FGM/C, these challenges can all become exacerbated. This is primarily a result of the cultural sensitivities associated with FGM/C, lack of provider knowledge/experience and haphazard organisational processes. Together, these can result in provider stress and suboptimal care. However, the review has also shown that these obstacles can be overcome. Key to this are well-trained, knowledgeable and skilled providers, good communication (especially strategies to address language barriers and to involve families where appropriate) and effective organisational systems and processes.

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

Limitations and evidence gaps in review 2

This was an extremely comprehensive review; however, the key limitations are that there was very limited evidence on providers’ practices around prevention and safeguarding and, as highlighted previously, little explicit research on factors that facilitate or hinder adherence to guidelines around FGM/C identification and record-keeping. In addition, the majority of papers have focused on maternity care settings and maternity care professionals. There is very little evidence to date on the views, experiences and practices of professionals in primary care or other non-obstetric settings (e.g. sexual health, health visiting and school nursing). This is an area for future research.

Relevance to the UK context

The results of review 2 are derived from 30 papers, representing 28 studies across many OECD countries. Five papers, representing four studies, were undertaken in the UK: 14% of all studies in review 2.56,163,213,222,228 Of these four studies, three were undertaken in the last decade, all of which were conducted between 2012 and 2014.163,222,228 There are no UK studies from within the last 5 years. A more in-depth analysis of the findings reported by the UK studies showed that two studies (both low quality) contributed findings to analytical themes 1–5.56,213,228 Only one study contributed findings to theme 6 (optimal service configuration).228 All studies reported on analytical theme 3 (encountering the ‘other’ in clinical practice) and three of the four studies reported on analytical themes 1–3. In conclusion, although the UK studies do contribute across the themes (particularly themes 1–3), given the relatively small number of UK studies in review 2, their relatively poor quality and the dates when they were conducted, it is hard to judge to what extent review 2 findings are applicable specifically to the current UK context.