Discussion, implications and recommendations

Introduction

The two reviews show that FGM/C – literally and symbolically – embodies complex processes of cultural change and cultural interaction that are occurring as a result of globalisation, migration and super-diversity. These processes manifest themselves very concretely in health care in terms of influencing how individuals seek care, how care is delivered and experienced by all involved and how services are configured.3,6,99 Responding and adapting to super-diversity is perhaps one of the major contemporary challenges facing the NHS. This discussion considers these challenges in relation to the review findings on FGM/C-related care and will illuminate these with reference to concepts of ‘cultural competence’ and ‘cultural safety’.

Developing culturally safe care for female genital mutilation/cutting in a context of super-diversity

There is a major body of literature that explores concepts such as cultural awareness and cultural competence. These are often depicted on a continuum whereby practitioners (and also organisations and systems) move from developing an awareness of the needs of clients from other cultures, to being aware of one’s own cultural values and how these shape service provision, to being able to effectively engage across cultures to build relationships and provide culturally responsive and appropriate services.231 In Canada, Australia and New Zealand, the concept of cultural competence has been extended even further into a commonly used discourse of ‘cultural safety’. Cultural safety derives from critical social theory and argues that traditional approaches to cultural competence fail to adequately take into account power relations within health-care delivery that are historically unequal between migrant or indigenous groups and health-care providers and services.232 Within a cultural competence discourse, it is argued that the power to define norms of health behaviour and/or to prescribe appropriate courses of action usually lies with health professionals.233 As such, migrant groups remain represented as the ‘other’ and may be viewed within a deficit model – as a problem that needs to be fixed – rather than as equal partners whose knowledge and values can and should contribute equally to a relationship or to service development initiatives. Culturally safe practice, by contrast, is predicated on relationships of mutual trust and respect. It is a transformative and rights-based approach, seeking to uphold the principles of respect, dignity, empowerment, safety and autonomy.234 Cultural safety envisages the health-care encounter as a negotiated and equal partnership in which trust plays a central role. The health-care practitioner’s role is to enable patients to say how a service can be adapted and to negotiate an agreed approach – a key aspect of shared decision-making.235 The converse of cultural safety is ‘cultural risk’236 in that culturally unsafe practices are defined as ‘any actions that diminish, demean or disempower the cultural identity and well being of an individual or group’.237 However, cultural safety is not just a feature of individual practice. It is argued that culturally safe practice must be institutionalised through organisational policies and structures so that it becomes part of mainstream health-care provision rather than being dependent on individual practitioners who may or may not adopt its values and approach. As with cultural awareness and competence, advocates of cultural safety call for organisations and systems to enshrine its principles through, for example, policy, training, flexible service development or resource allocation.238–240

Care associated with FGM/C is an exemplar of the challenges of achieving cultural safety in a context of super-diversity. The two reviews have highlighted areas of good practice and positive experiences, but have also highlighted many challenges in care-seeking and care delivery, including poor care experiences. Furthermore, the reviews suggest that the positive experiences are more often associated with individual practitioners’ abilities and values, rather than being part of a systematic mainstreamed approach within a service. As such, the reviews highlight three key areas in which change and development are required. First, there is a need to address and better understand cultural competence and cultural safety in health-care interactions. Second, there is a need for service delivery models and organisational processes to adapt towards culturally safe service provision in a context in which vulnerable migrant women increasingly form a significant percentage of patient groups. Finally, there is a need for professional training and community engagement to be implemented to support appropriate care-seeking and care delivery. These three issues are discussed in the following sections in relation to the findings from both reviews.241,242

Cultural safety in health-care encounters associated with female genital mutilation/cutting

Culturally safe or culturally competent care is predicated on achieving relationships based on trust and respect. This, in turn, is based on an ability to communicate and to be heard. These issues are considered further in this section.

Respectful care

The majority of the papers in the two reviews focused on the maternity setting. Globally, there is currently enormous emphasis on promoting respectful care during childbirth.243,244 However, the two reviews (especially review 1) show that for many women affected by FGM/C, the care they receive in OECD countries, including the UK, is perceived as profoundly disrespectful and disempowering. A recent systematic review of disrespect and abuse in childbirth created a typology of six forms of disrespect/abuse:245

1. physical and verbal abuse
2. stigma and discrimination
3. failure to meet professional standards of care
4. poor rapport between women and providers
5. health system conditions and constraints
6. impact on utilisation of maternity services.

Many of the findings of review 1 map very clearly onto the subthemes within these broad categories. As such, it reveals an unacceptable picture of care for FGM/C-affected women during childbirth and highlights an urgent need to take action. Although the aforementioned systematic review245 was developed with specific reference to maternity settings, many of the same typologies of disrespect would also appear to be relevant to the other care settings highlighted in review 1, where women nonetheless needed to discuss an issue that is personal and sensitive and that relates to their sexuality, identity and genital area.

Again, with reference to maternity settings, work is under way to explore how ‘respectful’ care is defined and experienced by women.246 A recent global review247 identified 12 domains, as follows:

1. being free from harm and mistreatment
2. maintaining privacy and confidentiality
3. preserving women’s dignity
4. prospective provision of information and seeking informed consent
5. ensuring continuous access to family and community support
6. enhancing quality of physical environment and resources
7. providing equitable maternity care
8. engaging with effective communication
9. respecting women’s choices, strengthening their capabilities to give birth
10. availability of competent and motivated human resources
11. provision of efficient and effective care
12. continuity of care.

All of these domains were also highlighted by women in review 1 and some professionals in review 2, as being relevant to, and having an impact on, the care experience. In women’s descriptions of positive care experiences, they particularly emphasised open communication, being treated with dignity, being free from harm/provider competence, being given information and choices, involving the family and continuity of care as a key feature that enabled high-quality relationships to form. Together, these features enable a woman to feel safe and to have trust in the system.87,248

The same dimensions of respectful care are being promoted as a core work stream of the UK’s Maternity Transformation Programme, linked to ‘Better Births’.98 It would seem highly important that these packages specifically include the needs of women affected by FGM/C.

Communication, relationships and trust

Both reviews highlighted the critical role of communication both in disclosing or identifying FGM/C and in delivering appropriate care. Discussions about FGM/C could be hindered by language barriers and cultural differences/misunderstandings but also by an apparent lack of trust of women in the provider or in the system generally.

The review findings concur with a large body of literature on language barriers affecting the care of migrant groups and on the importance of configuring services to address these,249 an issue that is discussed in more detail in Service configuration to promote access and equity. The review findings also strongly concur with studies that show that trust is essential for building effective health-care relationships,87,250,251 but the findings also show that this may be particularly challenging because of the sensitivity of FGM/C. The reviews showed that lack of trust was a potential issue with interpreters, health professionals and the ‘system’ as a whole.

With respect to language barriers, the reviews showed that a common strategy used by practitioners was to use interpreters, either formal (professional) or informal (e.g. family members). The reviews are consistent with the existing evidence base in this area, and showed that both of these strategies could be problematic.252,253 There could be a lack of trust between women and either group of interpreters but also between interpreters and providers who were unsure if the interpreter was translating correctly. Existing evidence supports the lack of confidence in informal interpreters, for example a recent study in Holland showed that informal interpreters translated less than half of what was actually communicated.254 Problems with informal interpretation can potentially be addressed by increased training and by increased availability of professional interpreters.255 However, in the context of the reviews, owing to the sensitivity of the topic, it was shown to be imperative that women and providers were able to trust the interpreter. The reviews cited suggestions made by women and professionals of utilising community advocates or liaison workers with an expanded role, to act not just as an interpreter but as a cultural mediator who could raise awareness, befriend women, signpost to services and act as an advocate for their rights. Such approaches have been positively evaluated in other settings,256–260 but need further exploration with reference to FGM/C. Nonetheless, they seem consistent with a cultural safety agenda, in that this model seeks to empower women to interact on an equal footing with providers rather than simply to overcome language differences.

The reviews showed that women’s trust in providers and the ‘system’ was affected when women felt disrespected or disempowered or when they sensed that providers lacked experience and skill. In this latter sense, women felt physically at risk as well as perceiving a potential threat to their identity or culture. However, the findings also suggested that trust could be successfully established, but required contexts where providers were knowledgeable, displayed cultural understanding, sought to understand woman’s own needs and preferences without stereotyping and engaged in dialogue with women to provide them with a sense of control.261 Thus, the review findings pointed to positive experiences when practitioners utilised a trusting relationship to engage in shared decision-making and to offer person-centred care. Most health-care practitioners are trained in these approaches, but the review supports existing evidence showing how challenging it can be to implement these when there is limited time and poor communication.262,263 The reviews suggested that continuity of care could be a key strategy for helping to build trusting relationships in order to provide better-quality care. In the UK, these models are particularly being advocated in the maternity care setting, but could also be implemented in primary care.92,98,264 Furthermore, the Better Births Maternity Transformation Programme has a workstream on developing personalised care plans to help shared decision-making with women throughout pregnancy and birth.98 This would seem to be a particularly useful mechanism for helping women and maternity professionals to communicate more effectively about approaches to care in relation to FGM/C.265

A final point relating to trust and respectful care concerns the FGM/C prevention and safeguarding agenda. Although direct or indirect prevention were not prominent themes in either of the reviews, the findings consistently pointed to the fact that women felt able to have open communication with providers if they felt respected and if they trusted the provider and the service. From this, it can be inferred that discussions around prevention and safeguarding are far more likely to happen and to be meaningful if good relationships and respectful care can be ensured.

Culturally safe service delivery and service configuration

Addressing trauma and mental health needs

A clear finding from both reviews was that, for some women affected by FGM/C, childbirth and other clinical interventions could be traumatising, triggering flashbacks of their original cutting, creating profound anxiety and distress and potentially leading to poor care experiences or avoidance of services.210,266 The reviews were unable to illuminate in any further depth how such women might best be identified or treated, or which women might be most at risk. This is an important agenda for future research.30,62,267–271 However, maternity care services in the UK all have well-established processes in place for dealing with highly anxious women or women who have experienced trauma. It would seem important for services to ensure that these interventions are also available for women affected by FGM/C.63,272 A minority of the specialist FGM/C services in the UK do offer psychotherapy or counselling support and the latest commissioning guidelines15 specifically recommend the provision of these services.273 The findings from these reviews strongly endorse this recommendation. Likewise, the reviews show that, for some women, the move to a Western country can prompt difficult feelings with respect to their culture and their bodies as they started to re-evaluate the practice of FGM/C.266 Some of these women may likewise benefit from counselling or from support from relevant community organisations. Hence, the reviews also endorse the recent commissioning guidance on promoting community engagement and working in partnership with community organisations.15

Management of deinfibulation and culturally safe care

The reviews showed that a key area of concern for women and for clinicians related to management of deinfibulation.27,28,31,32,34 Deinfibulation raises concerns for physical safety but also cultural safety as it reflects an embodied process linked to a sense of cultural and bodily integrity and is a phenomenon that requires negotiation and cross-cultural understanding between practitioners and patients. Hence, it is given specific consideration here.

Globally, the evidence around optimal timing (before pregnancy, antenatally or in labour) is equivocal.31,34 However, in pregnancy, most medical guidelines recommend antenatal deinfibulation in order to avoid any possible complications during labour, and also because services in Western countries are not always optimally configured to manage a women with type III FGM/C in labour.27,28 The reviews found that women’s deinfibulation preferences were strongly shaped by cultural norms around maintenance of chastity and virginity, making it difficult for unmarried women to contemplate deinfibulation, even when they may have wanted it. In some cases, they did make this choice, but it was unusual and was associated either with severe symptoms or with a deliberate choice to empower themselves. Once married, some women were supported to seek deinfibulation by their husbands if intercourse was proving difficult. However, this was not a cultural norm, and it was more usual for husbands to deinfibulate over the course of time. Our stakeholder engagement group noted that deinfibulation outside pregnancy was now also increasingly being requested as a way of providing documentation to support asylum claims. Hence, social norms may slowly be changing and community engagement (particularly the involvement of men) around this topic may encourage some women to seek deinfibulation before or just after marriage.199,274,275 However, this choice depends on women knowing that services are available and how to access them. Our reviews found that service availability and knowledge of these could be patchy at best. Hence, there is a need for more service development in this area.61 Thus, our review findings endorse the recent commissioning guidance to ensure that care pathways for non-pregnant women are established.15

Our review findings on this topic are supported by several recent studies and reviews.61,274 For example, in a specialist London referral clinic for children, four out of 18 girls with confirmed FGM/C (over a 1-year period, 2014–15) had type III FGM/C. All four girls and their parents wanted to wait until planning marriage before considering deinfibulation.276 Likewise, a study in Norway found that, among 82 female Somalis aged 16–25 years who had had type III FGM/C, 81% were unmarried and only 20.3% had sought health advice.277

With respect to pregnancy, the two reviews suggest that intrapartum deinfibulation is preferred by most women to avoid being cut twice. However, the findings also show that many women are fearful of how deinfibulation will take place during labour and that being cut or tearing can be a major source of anxiety for them leading up to, and during, the birth. These fears are greatly exacerbated when women encounter or hear about providers who lack confidence or experience in undertaking the procedure. A key finding was that deinfibulation was often not discussed during consultations, and women missed out on opportunities to find out more and to make informed choices. Interestingly, the reviews showed that when women were able to establish good relationships with knowledgeable providers over a period of time, they were able to inform themselves and were more likely to agree to antepartum deinfibulation.278

Finally, our reviews found that, for some women, deinfibulation could involve significant bodily, emotional and relational changes that required a time of adjustment, and that some women (particularly from Sudan, where it is a cultural norm) desired a degree of reinfibulation. This finding supports WHO recommendations that women could benefit from greater counselling and information about what to expect after the procedure.61,279,280

A key gap in review 1 was that there were no studies that specifically looked at deinfibulation from the perspective of unmarried or non-pregnant women or girls. Likewise, a key gap in review 2 was a lack of studies that looked specifically at information-giving and communication practices around deinfibulation or at the management of more-complex cases. These are areas that would benefit from future research.

Supporting and routinising culturally safe care with female genital mutilation-/cutting-related guidelines and protocols

Review 2, in particular, has shown that in many cases professionals reported a lack of knowledge of guidelines or protocols, both for identifying FGM/C and for managing FGM/C. These findings are supported by existing evidence.12,65,281 In relation to identifying FGM/C, both reviews showed that women were often reluctant or embarrassed to discuss FGM/C and preferred providers to raise the issue (as long as it was done in a sensitive manner). However, review 2 showed that providers often missed opportunities to discuss FGM/C, partly owing to lack of knowledge and confidence, but also because it may not have been considered to be a routine part of assessment or history-taking processes. Professionals noted that guidelines would help them to ask the key questions at the right time, and subsequently to be confident about care management, especially deinfibulation and dealing with requests for reinfibulation. Therefore, our reviews have shown that it is imperative for questions about FGM/C to be routinised within certain settings, and for clear guidelines to be developed within different services.15 Similar approaches have been very successfully utilised to address other health topics that communities and practitioners have traditionally felt uncomfortable with discussing, for example human immunodeficiency virus testing282,283 and domestic violence.284,285 The review’s PAG suggests that such routinisation may now be happening across the UK within midwifery services (although this needs to be confirmed), but is certainly not the case within other services. Our review suggests that routine questioning and follow-up care pathways should also be implemented within primary care, sexual health, obstetrics/gynaecology and health visiting.

The reviews also aimed to illuminate the question of why guidelines, even when they did exist, may not always be followed. Our reviews were unable to identify a great deal of in-depth information in relation to this question, as we did not find any process evaluations of interventions. However, the evidence was able to offer limited insights of issues that may potentially affect implementation. These include lack of clarity over roles and responsibilities, workload burden of reporting, unclear systems of recording FGM/C and unclear follow-up care pathways.

There is a wide body of evidence exploring barriers to guideline and intervention implementation286–289 that falls broadly within the field of implementation science.290 For example, the Supporting the Use of Research Evidence (SURE) guidance used by WHO on the implementation of new interventions/protocols/guidelines offers a potentially useful way of categorising barriers and facilitators.289 It includes several broad analytical domains, within which are subdomains, and associated barriers and facilitators. Some of these map well onto our initial review findings. For example, one of the domains is ‘providers of care’ and includes subdomains of ‘knowledge and skills’, ‘attitudes regarding programme acceptability, appropriateness and credibility’ and ‘motivation to change or adopt new behaviour’. Another domain is ‘health system constraints’, which includes, among others, subdomains of ‘human resources’, ‘clinical supervision’, ‘communication’, ‘patient flow processes’, ‘incentives’ and ‘bureaucracy’. Future research or evaluation on FGM/C-related guideline implementation would benefit from utilising an established framework such as SURE to analyse, understand and address potential barriers further, specifically in a UK context. This is particularly important as the recently introduced policies of mandatory reporting and recording introduce a layer of complexity into an already-sensitive topic area and a layer of bureaucracy into consultation processes that are already stretched for time (especially when there are language barriers to negotiate).

Service configuration to promote access and equity

In terms of configuration of services for FGM/C, the reviews highlighted two issues. The first related to the availability and accessibility of specialist expertise. The second related to the nature of services provided (i.e. the model of care).

The reviews suggested that care experiences were better when care was delivered by specialists. In addition, the reviews highlighted that the availability of this specialist expertise in areas of low prevalence or in rural areas could be challenging. The reviews did not identify any qualitative studies evaluating models of care. However, stakeholders at the national engagement event suggested that a hub and spoke model or mobile clinics might be a way forward in low-prevalence areas.

The review findings also indicate that local commissioning should consider and address particular needs to extend beyond provision of medical care to include counselling/psychotherapy and specialist sexual health services. These findings are supported by the wider evidence.30,42,291–294 In addition, stakeholders at the national engagement event strongly supported the development of more-holistic models of care. Importantly, as noted previously, this needs to include adequate access to trained and trusted interpretation services. Several such models already exist in England; the majority are based within maternity services but there are also excellent models (e.g. in Oxford and Bristol) based in primary care.46,57 All include a strong element of community partnership. Further mapping and evaluation of models of care would be beneficial to better understand their differential impact on accessibility, outcomes, cost and patient satisfaction.

Knowledge, training and community engagement for culturally safe care

Both reviews showed that the delivery of culturally safe and effective care requires greater knowledge and training for professionals, and greater awareness among communities regarding care-seeking and engagement with services.

Professionals

The reviews confirm findings from other studies that show an unmet training need for knowledge and skill development in all aspects of FGM/C-related care and in the development of cultural comptence.12,65,66,281,295–299 This applies to all cadres of health professional.300–305 In a UK context, there are a range of excellent training resources now available, mostly online; hence, it is important that different NHS services ensure that these are adequately disseminated and utilised. Likewise, UK national standards have recently been developed to guide curriculum development.41 In addition, WHO has just released a clinical management handbook that provides excellent comprehensive guidance for practitioners.279 It is unclear to what extent knowledge may have improved as a result of these recent initiatives or to what extent FGM/C is now embedded within pre- or post-registration training curricula in the UK. This is an area in need of future research. Although now somewhat out of date, a UK survey of 1756 midwives conducted in 2012 by the Royal College of Midwives306 suggests that some improvement may still needed. The results showed that the majority of the sample did not know where they should refer a woman with FGM/C and only 15.3% had attended a training session.306 Likewise, a 2015 survey307 among a mixed sample of 157 doctors and midwives at a district hospital in London with a high prevalence of FGM/C found that 71.4% felt that they would benefit from further training on the subject, and only 21% of respondents stated that they would feel comfortable discussing FGM/C with patients. The majority of health-care professionals (65.3%) had not read any guidelines relating to FGM/C.307 Another 2015 survey308 conducted among 75 midwives and nurses at a district general hospital in the North East of England found low levels of knowledge and confidence regarding clinical management but higher levels around legal and safeguarding issues (only 16.7% felt confident caring for patients with FGM/C and just 5.6% felt sufficiently trained, but 80.6% were aware that FGM/C was illegal in the UK and 77.8% knew about appropriate safeguarding measures).308

The review findings suggest that additional training seems to be particularly required in relation to communication around FGM/C, awareness of women’s psychological needs and management of clinical interventions (particularly deinfibulation, where it was clear that competency was highly variable).

Review 2, in particular, showed that professionals can find FGM/C a difficult issue to understand and that some of their clinical experiences can be stressful, especially when they feel that they lack clinical competence and when cross-cultural misunderstandings arise. Similar findings have been reported in other contexts.298 Hence, staff may also benefit from opportunities to discuss FGM/C-related issues face to face in a supportive environment with experts, including FGM/C survivors. Furthermore, as with any skill, it is important for professionals who may be called on to undertake deinfibulation to have adequate training that extends beyond watching an e-learning video (the current minimum requirement for UK obstetric registrars). This was a point strongly made by a group of 30 obstetric registrars who attended a presentation on the review.

Recent systematic reviews have highlighted that the evidence on the most effective approaches to training around FGM/C is unclear, and that this area would benefit from further research.301,309 One study by Jacoby and Smith,300 however, showed a clear increase in knowledge, confidence and cultural competence among midwives in the USA following a training programme that included didactic teaching, case studies, a cultural roundtable discussion and a hands-on skills session on deinfibulation and repair.

Women and communities

Review 1 showed that awareness of services and knowledge about possible interventions related to FGM/C (e.g. deinfibulation, counselling, reinfibulation issues) were limited among women, especially in low-prevalence areas. The reviews pointed to a need for more information resources to be available for women on all aspects of care around FGM/C.60,310,311 There is, as yet, no clear evidence on the most-effective approaches to health education.

Both reviews highlighted the important role that families and husbands had on women’s care-seeking and health decision-making. These findings support existing evidence49,312,313 and NHS commissioning guidance15 on the need for greater information- and awareness-raising approaches within communities, and for these to include husbands and families.314,315 Both reviews had findings in which women and professionals called for a need for working in partnership with communities – an approach that is strongly endorsed by programmes in the UK316,317 and by findings from a recent research study that interviewed policy-makers and activists across Europe.318

Implications and recommendations

The implications of the reviews are presented in the following sections. These are integrated implications (i.e. representing implications from both reviews taken together). As with the discussion, the decision was taken to integrate the implications in order to avoid repetition as many of the implications from the reviews address the same underlying issues (e.g. training of health workers or strategies to address language barriers).

UK stakeholder input and UK relevance of implications and recommendations

Although the review evidence reflects a variety of OECD country contexts, the implications/recommendations in this report have been formulated specifically with a UK NHS context in mind.

The implications and recommendations have been shaped by an extensive process of consultation with the whole project team and PAG (see Chapter 2). They have been further refined at a national stakeholder consultation event with 65 participants from a wide range of organisations and professional groups (see Appendices 14–16). In addition, the findings have been discussed at a meeting with 30 obstetric/gynaecology registrars (see the report in Appendix 17). Participants at these events strongly endorsed the findings from both reviews as being largely consistent with their own experiences (see Appendix 14). However, there are certain issues that need more nuanced UK-specific exploration. For example, given the relatively small number of UK-based studies in review 2, the applicability of its findings to UK health professionals remains somewhat unclear. In addition, in the light of recent UK training initiatives, it is unclear whether or not there would be key differences between professional groups.

Implications for practice, service configuration and training

Table 10 presents the implications for practice, service configuration and training.

Recommendations for research

The recommendations for research are presented in Box 5. For clarity, recommendations have been grouped into specific topic areas. The whole list has also been numbered to reflect research priorities. Priority areas were discussed during the national stakeholder event and finalised through further discussion among the review team.