Female genital mutilation/cutting
Female genital mutilation (or female genital cutting) – henceforth abbreviated to FGM/C (female genital mutilation/cutting) – refers to all procedures that involve the partial or total removal of the external female genitalia or other injury to the female genital organs for non-medical reasons.1 FGM/C is categorised by the World Health Organization (WHO)1 into four types, with differing degrees of severity, as described in Box 1.
Female genital mutilation/cutting is practised in 30 countries across north and sub-Saharan Africa and in parts of the Middle East and Asia.2 The UK is in a period of ‘super-diversity’, which is characterised by high rates of migration from countries all over the world (rather than mainly from former colonies as in previous decades).3–6 As a consequence, the UK’s population is increasingly diverse and includes many groups from countries where FGM/C is practised.5–7 Hence, the need to address FGM/C within the NHS is already significant and is expected to increase.6,8–10
Evidence suggests that women and girls who have undergone FGM/C experience many barriers to accessing appropriate care in the UK.11 Research also suggests that health professionals lack knowledge, experience and confidence in addressing FGM/C-related issues.12 FGM/C-related services in England and Wales are reported to be fragmented and highly variable, lacking clear referral or care pathways, and difficult for women/girls to access.13–15 FGM/C therefore presents a growing health issue for the NHS and there is a need to develop more and better services in this area.13
This project seeks to inform the development of services for FGM/C-related health care through two syntheses of qualitative evidence regarding the views and experiences of service access, service provision and quality of care from the perspectives of (1) women/girls who have undergone FGM/C and (2) health professionals.
Size of the problem
Globally, it is estimated that over 200 million women and girls have experienced FGM/C.2 In Europe, where many nations are ‘destination’ countries for migrants from FGM/C-practising areas, it is thought that over half a million women and girls are FGM/C survivors.16 In England and Wales, a comprehensive report published in 2015 estimated FGM/C to be a significant problem, with over 137,000 women/girls directly affected, as follows:9
- 10,000 girls aged < 15 years
- 103,000 women and girls aged 15–49 years
- 24,000 women aged ≥ 50 years.
The same report estimates that women with FGM/C have made up approximately 1.5% (nearly 11,000) of all UK maternity episodes since 2008.9 In the recording cycle April 2016 to March 2017, there were 9179 attendances reported in NHS trusts and general practices in England where FGM/C was identified or where a procedure for FGM/C was undertaken. Eighty-seven per cent of these attendances were in midwifery or obstetric services.17 The 2017–18 figures for England show a slight reduction in numbers, to 6195 newly recorded attendances.18 The figures show that all major urban areas in the UK have significant populations affected by FGM/C, with most areas of the country affected to some extent.9,17
The current figures from England suggest that FGM/C attendances are primarily by women of childbearing age. For example, out of 6195 recorded attendances in 2017–18, only 2.9% were for women aged ≥ 45 years.18
With respect to FGM/C-related needs among girls, It has been estimated that approximately 60,000 girls in the UK aged 0–14 years have been born to mothers who have undergone FGM/C and may themselves be at risk of the procedure.9 However, current figures from England suggest that it is primarily adult women rather than girls/teenagers who are accessing NHS services. For example, in 2017–18, only 1.13% of all recorded attendances were for girls under the age of 18 years.18
Health consequences of female genital mutilation/cutting
Female genital mutilation/cutting is associated with significant negative physical, psychological and sexual health sequelae.19–21 In the short term, these include infection, urinary retention or injury to other tissues (e.g. vaginal fistulae). In the longer term, they include psychological problems, post-traumatic stress disorder, painful intercourse and other sexual problems, relationship problems, chronic pain, chronic infections, infertility and complications in childbirth.22–25 Hence, it is essential that women and girls affected by FGM/C have access to services that can identify and meet these multiple complex health needs and that services include mental health-care as well as physical health-care provision.13,20,21,26
Health problems may be particularly severe for women with type III FGM/C, also referred to as infibulation. This type of FGM/C is practised predominantly (but not exclusively) in countries in the Horn of Africa, such as Somalia, Sudan, Ethiopia, Eritrea and parts of Kenya. Women with type III FGM/C require a degree of deinfibulation in order to have sexual intercourse and to give birth.
Currently, deinfibulation is recommended for women and girls reporting medical or psychosexual symptoms related to type III FGM/C, or on request (i.e. personal choice).1 In addition, national and global guidelines specifically recommend that deinfibulation is undertaken to prevent obstetric complications.14,27–29 However, the optimal timing for deinfibulation is unclear.30,31 The evidence base regarding outcomes of antepartum deinfibulation compared with intrapartum deinfibulation is weak.28,32–34 Nonetheless, there are compelling clinical reasons for preferring antepartum deinfibulation.35 These include the fact that it can be carried out under local anaesthetic in an outpatient setting, thus reducing costs and risks associated with any emergency procedures that may emerge during labour. In addition, given the lack of familiarity with type III FGM/C of many health professionals in destination countries (such as the UK), planned antepartum deinfibulation ensures that it is undertaken by trained and experienced professionals.32
Costs of female genital mutilation/cutting
There is a lack of data on the economic burden of FGM/C in high-income countries such as the UK.36 However, recent policy documentation cites a report commissioned by the Department of Health and Social Care estimating the annual cost of FGM/C to the NHS to be £100M if all needs were met/treated in a single year. This estimate comprises £34M associated with physical health needs and £66M associated with mental health needs.15
Legal and policy context of female genital mutilation/cutting in the UK
Female genital mutilation/cutting has been illegal in the four countries of the UK since 1985 and is considered a form of abuse (FGM/C undertaken outside the UK on UK nationals or residents was criminalised through additional Acts in 2003 for England37 and 2005 for Scotland38). In 2014, the UK Government published a declaration to end FGM/C, and initiated a National FGM/C Prevention Programme.39 A series of policy changes have been introduced as part of this programme in order to obtain more accurate information on the size and scale of the problem and to enhance safeguarding processes; these are (1) mandatory recording, (2) mandatory reporting and (3) use of a FGM/C Risk Indication System (RIS).
Acute NHS trusts in England have had to record all cases of FGM/C within a FGM/C prevalence database since April 2014. This database has now been re-named the FGM/C Enhanced Dataset (an Information Standard – SCCI2026). The Information Standard requires clinicians across all NHS health-care settings to record in clinical notes when patients with FGM/C are identified and what type of FGM/C has been identified (patient consent is not required).15 In addition to mandatory recording, from October 2015 a new statutory duty has been introduced through the Serious Crime Act40 requiring all regulated health professionals to report cases of FGM/C in girls under the age of 18 years to the police (known as ‘mandatory reporting’). In addition, a new national health system, the FGM/C RIS, was introduced in 2015, aiming to support safeguarding of girls up to the age of 18 years. The system allows health professionals to add an indicator on a girl’s electronic summary care record to highlight that she may be at risk. This information can then be confidentially shared among health professionals. To set the indicator, professionals are required to seek parental consent.
These measures signal a new policy drive across the NHS to address FGM/C prevention (as well as care) and to significantly improve the identification of women and girls have who undergone FGM/C.10,13,26 However, all of the above measures place an additional burden of work on health professionals and require additional training and support to understand the legal complexities, the logistics of how to use the systems and the sensitivities of discussing FGM/C with patients/communities and greater awareness of local safeguarding pathways.15,41 The ways in which these changes will have an impact on the experience of health-care delivery from a patient’s or professional’s perspective are, as yet, unclear. However, systematically examining the existing evidence base on FGM/C may help to identify some of the potential implications of these new policies for practice and future research.
In some communities (particularly in Sudan) in which FGM/C type III is common, reinfibulation is practised after childbirth. However, in the UK and most high-income countries, it is illegal for professionals to undertake reinfibulation.42,43
Female genital mutilation-/cutting-related service provision and development in the UK
Currently, there is limited evidence regarding the availability and accessibility of FGM/C-related care across the UK. However, there are strong indications that it is it poorly co-ordinated and sub-optimal.13 To date, FGM/C-related care within the NHS has primarily been provided in the context of maternity services. Specialist clinics run by specialist midwives have been established in a number of maternity services, which provide medical interventions as well as access to counselling and other psychological services. However, the majority of maternity services do not offer this specialist provision, although most now have a designated lead for FGM/C. In these non-specialist settings, care tends to be focused primarily on medical management (e.g. deinfibulation), with limited attention to other health needs or to considering the FGM/C-prevention agenda [Project Advisory Group (PAG) opinion].13,44 Accurate information on the accessibility and quality of FGM/C-related care within maternity services is difficult to estimate as there are no up-to-date statistics available.
There is a lack of evidence on FGM/C management in non-maternity settings. However, the view of the expert PAG for this project is that communication about, or management of, FGM/C in non-maternity settings is currently poor, with a lack of clear referral or care pathways, and with health professionals lacking confidence and experience around FGM/C. Access to any non-maternity-focused specialist FGM/C services is, therefore, limited and highly variable across the UK.
As of 2017, there were 16 specialist FGM/C clinics across England (these numbers may now have changed as services are re-commissioned, but are not thought to be greatly increased).45 Many of these specialist services are actually based within maternity services and referral pathways from other services are not well established. Moreover, the majority of these specialist clinics (n = 11) are located in London, with the remaining five based in other urban areas.13,45 Therefore, many FGM/C-affected communities currently do not have access to specialist services, and this is an issue particularly for those living in rural areas and other low-prevalence areas. This situation potentially creates inequalities in access to care, as highlighted in recent reports.8,46,47
In the current policy and legislative climate, health professionals across all sectors, especially primary and maternity care, are required to be knowledgeable about FGM/C and to have the requisite skills to deal with affected women/girls and communities in a sensitive and appropriate manner.10,13 This is particularly important not only to ensure that health-care encounters are focused on supporting women/girls who are living with the consequences of FGM/C but also to address the sensitive issue of prevention.13 To achieve this agenda, NHS England has recently published health professional training standards.41 In addition, several professional and multi-agency guidelines have been published that call for greater levels of specialist and holistic service provision, clearly delineated FGM/C-related care pathways and clear referral pathways, backed up by enhanced training of health professionals.10,13–15,26,27,29
Why this research is needed and why it is needed now
Currently, there are limited resources to inform FGM/C-related training and service development. Much of the existing body of research relates to understanding the practice of FGM/C,48 the prevention of FGM/C49–51 and the psychosocial and clinical consequences of FGM/C.19,21,24,52,53 A recent expert commentary on FGM/C identified key gaps in the evidence on clinical management and on models of service delivery.30 Furthermore, a recent series of systematic reviews undertaken by WHO to inform global guideline development found that evidence on the clinical effectiveness or cost-effectiveness of different models of care for FGM/C is lacking.54,55
Given the complexity of service development and the sensitivity of FGM/C, it is imperative to take into account the views and experiences of all stakeholders. This project therefore proposed to undertake two systematic reviews focusing specifically on qualitative evidence: one related to women’s/girls’ experiences of health care in relation to their FGM/C and one related to health-care professionals’ views and experiences of service provision. Given the current focus in the UK on the development of care pathways for non-pregnant women as well as pregnant women,15 the reviews sought to understand relevant issues across all health-care settings and across the life course. In addition, in order to ensure that the equity agenda was addressed, the reviews sought to explore issues around access to care as well as experience of care.
A brief look at the existing evidence indicates further why these reviews are important and what kind of issues they will illuminate to be useful for service development.
Perspectives of women/girls who have undergone female genital mutilation/cutting
In the UK context, evidence suggests that several barriers to FGM/C-related care-seeking exist from the perspective of women/girls. Some of these relate to accessibility in terms of not knowing where to go or who to speak to and not being aware of any specialist provision.11 Other barriers highlighted in existing research relate more directly to quality of care, such as feeling judged or misunderstood or feeling unable to communicate about FGM/C-related problems.11,56–59
At the time of project development, rigorous searches were undertaken to identify any existing published reviews, protocols, registered reviews and registered review titles [including on PROSPERO, The Cochrane Library and the Joanna Briggs Institute (JBI) Database of Systematic Reviews and Implementation Reports databases]. At that time, there was no registered ongoing work in relation to women’s/girls’ views and experiences of FGM/C-related health care. This was a key gap. Since this project commenced, the above-mentioned WHO systematic review series was published54 and included three qualitative reviews. However, these were focused on evidence related only to specific clinical interventions rather than health-care experiences more generally. Hence, they identified a very limited number of studies. Nonetheless, they highlighted that women’s experiences were often negative and characterised by unmet needs for information and support.60–62 Two additional reviews, by Hamid et al.63 and Turkmani et al.,64 have very recently been published, focusing specifically on the pregnancy and birth experiences of migrant women affected by FGM/C. Their findings are consistent and conclude that pain and anxiety around birth could be exacerbated by traumatic memories of FGM/C and by a perceived lack of provider competence in managing FGM/C. They also found that attitudes to FGM/C changed as women adjusted to life in a new country, but that this process could be difficult as women encountered negative reactions to FGM/C from health-care professionals from the West.63,64
Health professional perspectives and service delivery issues
There are three existing systematic reviews on health professional perspectives around FGM/C.12,65,66 These have identified a significant lack of knowledge, confidence and competence around FGM/C and have concluded that more and better training is required. These reviews provide useful evidence but still leave gaps in our understanding. In particular, the reviews have focused primarily on quantitative evidence, which, while highlighting trends, have been unable to provide a more nuanced picture of barriers to and facilitators of service provision. The need to consider wider factors in understanding health professionals’ practice is illustrated by a 2013 study of FGM/C management in a large London maternity unit.67 This found that, in spite of the existence of protocols, guidelines and training, clinical care for women/girls with FGM/C was suboptimal. The maternity unit had access to a FGM/C specialist service, but 41% of women with FGM/C were not identified until they arrived in the labour ward. Hence, even though a specialist service existed, it was not being optimally used to benefit women with FGM/C, and a significant percentage of opportunities were missed to provide women with specialist care. Similar findings were reported from a study in a maternity unit in Switzerland where, in spite of staff training and the existence of clear guidelines, FGM/C was correctly identified and managed in only 34 (26.4%) of 129 cases reviewed.68 Likewise, an audit in Lothian in Scotland (between 2010 and 2013) showed that of 487 women from FGM/C-practising countries, only 18% had any documentation relating to FGM/C, suggesting that opportunities for detection may have been missed.69 The reasons for this lack of adherence to protocols are unclear; hence, we suggest that reviewing the related qualitative evidence may shed greater light on organisational and personal factors that may influence health professionals’ views and behaviour in this area.70–80
Gaps in existing knowledge: what this project will add
With the exception of the reviews by Hamid et al.63 and Turkmani et al.,64 existing reviews on women’s and health professionals’ experiences have all taken a multicontext (or ‘lumping’) approach to the evidence81,82 and have included research from high- and low-income settings across the world. Many key themes from these reviews are therefore drawn from evidence from very different cultural and health system contexts and are not easily transferable to a UK or high-income setting. In order to address this shortcoming, the reviews in this project included evidence from high-income Organisation for Economic Co-operation and Development (OECD) contexts only.
The recent reviews by Hamid et al.63 and Turkmani et al.64 are similar to the review that we have undertaken with respect to women’s/girls’ experiences. However, those reviews focused only on English-language papers and looked only at the birth experience, whereas the reviews in this project have looked at all aspects of FGM/C-related health care, including factors influencing care-seeking and service access. In addition, in contrast to Hamid et al.63 and Turkmani et al,64 the reviews in this project have looked at all clinical settings and at all stages of the life course, not just maternity. This wider perspective is particularly important in terms of illuminating decision-making on topics such as timing of deinfibulation and care for non-pregnant women who may be experiencing symptoms. In addition, in accordance with The Cochrane Library83 and JBI84 methods, our reviews have included grey literature and research published in languages other than English. Hence, our reviews provide a significantly more detailed, holistic and comprehensive picture. This is exemplified by the fact that the review on women’s experiences (review 1, see Chapter 3) identified 57 relevant papers, whereas the reviews by Hamid et al.63 and Turkmani et al.,64 identified only 14 and 16 papers, respectively.
Situating female genital mutilation/cutting within a wider migration-related health policy and service context
Although this project is concerned specifically with health care related to FGM/C, it is important to situate this within the wider UK health-care context of service provision for migrant populations in a context of super-diversity.5–7,85,86 The vast majority of women with FGM/C in the UK are first-generation migrants and evidence shows that this group experiences a wide range of challenges around seeking and receiving health care.87–89 Likewise, health providers report a range of challenges in delivering care to migrant populations.90,91 These challenges are particularly acute within maternity settings, where many women with FGM/C are first identified, where migrant women are consistently shown to have poorer outcomes and where improvement of patient safety is a national policy imperative.92–98 Likewise, the NHS is under pressure to develop service models that can address the needs of a super-diverse population.3,7,99 In a time of stretched resources, more innovation and better evidence is needed to help guide this endeavour. Therefore, we hope that, although the reviews are specific to FGM/C, the reviews may also serve to illuminate key issues that may help this wider effort.
Research aims and purpose
The aim of this study was to undertake two separate systematic reviews of qualitative evidence to understand the experiences, needs, barriers and facilitators around seeking and providing FGM/C-related care from the perspectives of (1) women and girls who have undergone FGM/C and (2) health professionals. The two separate sets of review results will be integrated into a final synthesis and used to (1) formulate recommendations for NHS training, service development and improvement, (2) pinpoint key dimensions of quality of care that can be operationalised for use in future service improvement evaluations or patient-reported outcome measures and (3) identify areas where further research is required.
Aim and objectives of review 1
Aim
To explore the experiences of FGM/C-related health care across the life course for women and girls who have undergone FGM/C.
Objectives
From the perspective of women and girls who have undergone FGM/C:
- illuminate factors that influence FGM/C-related health-care-seeking and access to health services across the life course
- explore how quality of care is perceived and experienced in different health-care settings and with different groups of health-care professionals
- characterise and explain elements of service provision considered important for the provision of acceptable and appropriate health care
- describe factors perceived to influence open discussion and communication around FGM/C (including prevention) with health professionals.
Aim and objectives of review 2
Aim
To explore the views and experiences of health professionals of all cadres of providing care for women/girls who have undergone FGM/C.
Objectives
From the perspective of health professionals:
- explore how quality of care for women/girls who have undergone FGM/C is perceived in different health-care settings and among different professional groups
- characterise and explain elements of service provision considered important for the provision of high-quality care to women/girls who have undergone FGM/C
- illuminate factors perceived to facilitate or hinder appropriate provision of care for women and girls who have undergone FGM/C
- identify processes and practices perceived to influence open discussion and communication around FGM/C (including prevention) with women/girls from affected communities.
Research team and patient/public involvement
This project was conducted by a core research team that was advised by a PAG. The core team comprised (1) academics with expertise in ethnicity and health, gender-based violence, qualitative methodologies and systematic reviewing (CE, RT, GH and JM), (2) an information specialist (JE), (3) a FGM/C specialist midwife who has served as part of NHS England’s National FGM Prevention Programme (JA) and (4) a FGM/C and women’s rights activist who runs a community organisation promoting African women’s rights, runs many anti-FGM/C campaigns nationally and internationally and runs a local FGM/C support group (VN). The PAG also comprised individuals with expertise in a range of areas, including obstetrics, general practice, midwifery, the voluntary sector (focusing on FGM/C issues) and specialist commissioning. In terms of patient and public involvement, we took the approach of ensuring that our community expert was a co-applicant on the project from its inception. Indeed, the project itself was co-constructed out of conversations between Valentine Nkoyo and Catrin Evans. Hence, patient and public involvement has been built into every stage of this project and has been key to its execution.
Structure of the report
Chapter 2 of this report presents the methodology underpinning the two reviews and the methods used. It includes a detailed description of the literature search that was undertaken. The results of the search are also presented in Chapter 2. This is because a single literature search was undertaken for both reviews, hence it needs to be presented in depth only once. Chapters 3 and 4 provide detailed descriptions of the results of reviews 1 and 2, respectively. Chapter 5 presents an integrated synthesis of reviews 1 and 2 that illuminates the health-care challenges around FGM/C in a holistic manner to account for, and explain, both patient and professional viewpoints and experiences. Chapter 6 discusses the review findings in the context of the wider literature and sets out the implications and recommendations of the synthesis. Chapter 7 presents the project conclusions.