Improving care for women and girls who have undergone female genital mutilation/cutting: qualitative systematic reviews

Article history

The research reported in this issue of the journal was funded by the HS&DR programme or one of its preceding programmes as project number 15/137/04. The contractual start date was in March 2017. The final report began editorial review in July 2018 and was accepted for publication in January 2019. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HS&DR editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.

Declared competing interests of authors

none

Copyright statement

© Queen’s Printer and Controller of HMSO 2019. This work was produced by Evans et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.

2019 Queen’s Printer and Controller of HMSO

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.

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.

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.

Introduction

In this chapter, we describe the methodology and methods used in both reviews. The literature search was conducted for both reviews at the same time (i.e. as one step). However, the other stages were conducted sequentially (i.e. we undertook all of the stages of review 1 first, followed by those of review 2). Given that the methods followed were exactly the same, the methods used in each stage are described in this chapter only once.

The research aims and objectives were constructed to identify insights about lay/health professional experiences of FGM/C-related health care and perceived appropriateness and acceptability of services. These are questions best answered by qualitative research;100,101 indeed, it is increasingly recognised that qualitative evidence syntheses have an essential role to play in understanding barriers to and facilitators of service initiatives. 102,103 The overall design and synthesis methodology for each review was the same. Both have been reported as per Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines. 104

Methodology

There are many possible approaches to qualitative evidence synthesis, with most discussions in this area characterising the different types along a continuum between aggregation and interpretation. 105 If the purpose of a synthesis is to generate new theoretical insights, a highly interpretive approach such as meta-ethnography may be most suitable, informed by an idealist epistemological stance. However, if the purpose is to inform policy or practice, a more aggregative or thematic approach informed by a realist epistemology is often advocated. 106 The latter is also suggested in cases in which the existing evidence is likely to be descriptive (as in much health services research) rather than highly theoretical or conceptual. 107 An initial scoping of the literature suggested that this was the case for the proposed syntheses. A thematic synthesis approach involves using thematic analysis techniques to identify key themes from primary research studies. 108,109 Synthesis involves an iterative and inductive process of grouping themes into overarching categories and exploring the similarities, differences and relationships between them. Thematic synthesis explicitly aims to move beyond generating a list of descriptive themes (as would be the case in meta-aggregation110) in order to identify new, higher-order, analytical insights that can contribute to new understandings of a phenomenon. Review recommendations, however, are clearly formulated to inform policy and practice. As such, thematic synthesis was considered the most suitable approach for the two systematic reviews. 111 Both reviews were conducted following the guidance set out by the Cochrane Qualitative and Implementation Methods Group. 83,103,110–114

Protocol and PROSPERO registration

Both review proposals were registered separately with the PROSPERO database. 115,116 A combined protocol for both reviews has been published in BMJ Open. 117

Search strategy and study selection

An exhaustive and sensitive search strategy was developed by an experienced information scientist (JE). The search strategy was designed to identify papers for both reviews; thus, it is reported here as one search.

Search results

The search results are presented in a flow diagram in Figure 1 as per the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. 125

FIGURE 1.

The PRISMA flow diagram.

Quality assessment

The role of critical appraisal in qualitative evidence synthesis is contested and there is a lack of agreement on (1) the appropriateness of excluding studies, (2) the potential impact (or not) of excluding eligible papers on review outcomes and (3) the criteria on which quality should be established. 126–129 For these reasons, the team adopted an inclusive approach to critical appraisal, using the appraisal process to enable an in-depth understanding of each paper and to facilitate a critical, questioning approach to the study findings. 130 Studies were not excluded on the basis of quality; rather, the quality assessment was used (1) to judge the relative contribution of each study to the overall synthesis and (2) to assess the methodological rigour of each study as part of a process of assessing confidence in the review findings. 131–135

Following the guidance of the Cochrane Qualitative Methods and Implementation Group136 and the JBI,84 reports and theses from the grey literature were appraised in the same way as papers that were published in peer-reviewed journal articles. 120,122,123

Study quality was assessed by two reviewers (RT and CE) using the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI). 137,138 The domains examined in this tool have been found to be more coherent and more sensitive to assessment of validity than other commonly used tools (see Appendix 4). 128 Team meetings were used to achieve a shared and consistent approach in operationalising the domains in the tool. A third reviewer (GH or JM) was asked to comment on any papers for which there was uncertainty or disagreement and discussions were held until a final consensus on assessment for all the papers was achieved.

The JBI-QARI has 10 questions. These were applied to each individual paper and an aggregate score was calculated (Table 4). In addition, reviewers’ comments were recorded, providing an explanatory rationale for why questions had been answered in a particular way. There is some debate over the use of critical appraisal tools to ‘score’ papers, especially if arbitrary scores are used to exclude papers from a review. 110,135,140 However, as explained above, we did not use the score to exclude papers. Rather, we adopted this approach primarily to enable us to determine an overall, if somewhat crude, picture of the quality of the whole body of evidence within each review, and to assist with the assessment of methodological limitations as a key part of the process of establishing the level of confidence in each of the review findings (see Assessment of confidence in the review findings: CERQual). 112 A criticism of ‘scoring’ qualitative critical appraisals is that it can be hard to distinguish between the poor conduct of a study and poor reporting, especially where journal word limits constrain the level of detail that can be reported. 110 In addition, there is no consensus regarding the relative importance of any one domain within an assessment tool over another, and, hence, whether or not they should all be given an equal weight. In view of these concerns, we chose to adopt a ‘weighting system’ used in previous studies by Higginbottom et al. ,141,142 in which papers were grouped into one of three ‘bands’ (high, medium or low) to enable a broad-brush evaluation to be made of their relative quality, as shown in Table 4.

As an additional strategy for overcoming the potential limitations of solely relying on a checklist to assess quality, we also chose to assess the ‘richness’ of the studies. This is an approach outlined by Popay et al. ,143 and subsequently operationalised further in Noyes and Popay144 and Higginbottom et al. 141,142 This approach defines study ‘richness’ as ‘the extent to which the study findings provide explanatory insights that are transferable to other settings’. 144 ‘Thick’ papers create or draw on theory to provide in-depth explanatory insights that can potentially be transferable to other contexts. By contrast, ‘thin’ papers provide limited or superficial description and offer little opportunity for generalising. Each paper was assessed by Ritah Tweheyo and Catrin Evans against the criteria, as set out by Higginbottom et al. 141 (Table 5), and categorised as either ‘thick’ or ‘thin’.

Extraction of study characteristics

Details of each of the included papers were extracted into a Microsoft Excel^® (Microsoft Corporation, Redmond, WA, USA) file using the domains from the JBI data extraction template (see Appendix 5). 137,146 Data extraction of study characteristics was primarily undertaken by one reviewer (RT); however, a second and third reviewer (CE and JM) double-checked the extractions of a subsample of papers for accuracy. In addition, the team had regular meetings to discuss any uncertainties, to ensure consistency of approach and to agree definitions.

Categorisation of study relevance

After data extraction, papers were categorised by Ritah Tweheyo and Catrin Evans in terms of their relevance to the respective review question. This assessment was made in order to gain a better understanding of the nature of the body of evidence, and also to facilitate the coding process, as described further in Thematic analysis and synthesis. Study relevance was defined as high, medium or low, as set out in Table 6.

Extraction of study findings

PDF (Portable Document Format) files of all of the included papers were imported into NVivo 11 (QSR International, Warrington, UK) software and the ‘findings/results’ sections were coded and analysed. If ‘findings’ were located in other parts of the papers (e.g. the discussion sections), these were also coded. 147

Thematic analysis and synthesis

Analysis and synthesis of the study findings followed the principles of inductive thematic analysis,108,109 and comprised four stages, as suggested by Thomas and Harden. 107 This was followed by a final, fifth step in which the findings from both reviews were combined into an integrated synthesis from which implications for policy, practice, education and research were derived.

The first stage involved intensive and repeated reading of all of the included papers to gain an overall in-depth understanding of their context and key findings. This stage was returned to many times during the analysis and synthesis to ensure that emerging interpretations remained deeply contextualised.

The second stage involved line-by-line coding of the findings of the primary studies. We coded only findings that were directly relevant to the review question. Where there were multiple papers from the same study, we ensured that distinct findings were coded from each (i.e. we did not code duplicate findings). Owing to the large number of papers in each review, we decided to start the development of the coding framework by focusing on studies that were likely to yield the richest and most relevant findings. Hence, we started with the studies that had been categorised as both ‘thick’ and highly relevant. These generated a large number of free codes, assigned line by line to the text according to its meaning and content. Subsequent studies were coded using the initial framework of codes and adding to them as new codes were identified. Ritah Tweheyo and Catrin Evans both independently coded the initial set of studies, conferring until the initial coding framework was agreed. Subsequently, Ritah Tweheyo completed the rest of the coding, with Catrin Evans and Gina Higginbottom regularly reviewing and discussing the evolving framework.

The third stage involved analysing the codes to explore areas of similarity or difference, grouping them together based on shared meanings to create new codes, and then organising these into a set of descriptive themes that captured the meaning of their constituent codes. In NVivo, this was represented as a hierarchical tree structure with several layers. Each theme was formulated to describe a key phenomenon in such a way as to capture its core meanings but also to explain and account for possible differences or variations in the phenomenon. To ensure rigour of the analytical process, the team actively sought to identify and understand possible ‘disconfirming’ cases that might challenge emerging interpretations,148 and to explore possible subgroup or contextual differences. These processes were aided by the creation of a theme matrix (see Appendices 8 and 12), in which each theme was mapped to its constituent studies. This helped the team to clearly see how common the theme was among the studies and what kind of study contexts or samples the theme related to, and to explore why it may have been present in some studies but not in others. During the analysis, the team referred to a list of questions to help them to develop the descriptive themes, as set out in Box 3.

Descriptive themes are derived from an interpretative process of constructing codes based on underlying meanings and considering how and in what ways these codes are related to each other. Thus, they represent a highly rigorous process that combines the findings of each study into a whole via a listing of themes. Nonetheless, Thomas and Harden107 argue that descriptive themes represent only the first step of synthesis, as, at this point, they generally do not yet ‘go beyond’ the findings of the primary studies to identify new concepts, understandings or hypotheses. This is achieved in the fourth stage, comprising the development of higher-order or ‘analytical’ themes, which constitute the key findings of the reviews.

For the fourth stage of synthesis, analytical themes were evolved through an in-depth process of comparing and contrasting the meanings of the descriptive themes, analysing these in relation to how they were, or were not, able to illuminate the review questions, and inferring broader phenomena, categories of meaning or social processes that they related to. This was a cyclical process that involved re-reading the papers, re-reading the codes and in-depth discussion among team members. Using this analytical process, the descriptive themes were organised into five analytical themes for review 1 and six analytical themes for review 2.

As far as possible, the descriptive and analytical themes were formulated as ‘directive’ findings indicating clear messages and/or suggesting clear lines of action for policy and practice. 137

The fifth and last stage of the synthesis involved bringing the findings from both reviews together to generate an overarching novel synthesis. This was done by creating short statements of findings for all of the themes (descriptive and analytical) in each review, listing them out, juxtaposing review 1 themes against review 2 themes and comparing and contrasting these. This process enabled the team to identify key phenomena that could explain and illuminate aspects of FGM/C-related health care through understanding both women’s and professionals’ views and experiences together. An overarching synthesis comprising four ‘synthesised findings’ was then drafted and extensively consulted and revised by the whole team until a final version was agreed.

Assessment of confidence in the review findings: CERQual

Assessment of confidence in the findings of each review was undertaken using the Confidence in the Evidence from Reviews of Qualitative Research (CERQual) approach. 110,112,131,136,149–153 Ritah Tweheyo and Catrin Evans led this process, working together and discussing the final assessments with the research team. CERQual is a relatively new, transparent method for assessing confidence in the findings in qualitative evidence syntheses; it is akin to the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach for establishing confidence in evidence of effectiveness for each outcome in a quantitative review. 154 The assessment of confidence in the evidence is made for each individual review finding and considers four elements: (1) methodological limitations (the extent to which there are problems in the design or conduct of primary studies that contributed to evidence of a review finding),136 (2) relevance (the extent to which the body of evidence from the primary studies supporting a review finding is applicable to the context specified in the review question),149 (3) coherence (whether or not the finding is well grounded in data from the primary studies and can provide a convincing explanation for patterns found in the data)152 and (4) adequacy of data (an overall determination of the degree of richness and number of data supporting a review finding). 151 Based on assessments made of any concerns across these four individual domains, each review finding is assigned one of four levels of confidence: high, moderate, low and very low.

In this project, the CERQual assessment was made for each of the descriptive review findings. Each descriptive review theme was summarised into a succinct ‘summary of a review finding’. These were then presented in a ‘summary of qualitative findings table’ containing several columns, including the summary of the review finding, the studies that contributed to the review finding, the assessments for each of the CERQual domains, the overall CERQual assessment of confidence in the evidence and an explanation of this assessment (see Appendices 9 and 13).

The CERQual assessment was made for each of the descriptive review findings (themes), rather than for the analytical themes or the themes in the overarching integrated synthesis, as the latter comprise an aggregation of descriptive themes as well as descriptions of patterns or explanations that are inferred as part of the interpretative process. There is, as yet, relatively little guidance for, or experience with, applying CERQual to higher-level analytical themes or theories. 150 The process of applying CERQual to our higher-order themes would, therefore, have required an extended period of methodological development and testing, which was beyond the scope of this project, and which is recognised as being part of the ongoing research agenda for CERQual development. 150

As of yet, unlike GRADE assessments, ‘dissemination bias’ within qualitative evidence synthesis is rarely discussed and needs further methodological consideration. 153 However, in this review, we sought to minimise possible dissemination bias by undertaking an exhaustive literature search that (1) was highly sensitive rather than specific, (2) included a range of grey literature (research reports, evaluations and theses) as well as published papers, (3) did not limit the date, (4) did not limit the language and, (5) included the original thesis or report in addition to the published paper when the former contained findings that were not reported in the latter. In addition, as noted above, we maintained an inclusive approach and did not exclude any studies on the basis of quality.

Reflexivity, rigour and quality of the synthesis

As with primary qualitative research, there are a number of strategies that can be adopted to enhance the rigour and trustworthiness of qualitative evidence synthesis. 148,155 We utilised a range of different approaches, as outlined in this section.

First, we were aware that our own theoretical, cultural and political positions might influence the ways in which we engaged with the texts and developed the interpretations. 156,157 The initial analysis and synthesis process was undertaken primarily by two reviewers (RT and CE), aided by the wider project team. Ritah Tweheyo is a black African public health researcher, originally from Uganda, and Catrin Evans is a white nurse and health services researcher from the UK. Neither has direct experience of FGM/C, and neither has worked clinically with women/girls who have experienced FGM/C. Both have had experiences of ‘being migrants’ and having to adjust to foreign health systems, but in different contexts. Both have experienced childbirth. Both consider themselves to be feminists and anti-racist (but again, these standpoints have emerged from different subjectivities). Both are anti-FGM/C but recognise the inherent political and epistemological tensions that exist when individuals located ‘outside’ cultures and communities try to explain a phenomenon that is deeply culturally and socially shaped. During the analysis, we continually challenged ourselves by asking if and how our emerging interpretations were being influenced by our own perspectives and repeatedly returned to the original papers to re-embed coded text within its wider study context and to check our interpretations. As an example, there were many accounts in the papers in review 1 in which women described extremely humiliating, distressing and stigmatising experiences in their health-care encounters, often linked to their race or ethnicity. Although we knew from prior reading that such experiences had previously been reported, reading so many accounts at first hand proved to be a shocking and distressing experience for us as reviewers. We had not expected this to be such a pervasive theme and we felt strongly that we wanted this aspect of women’s experience to be heard in the review. However, we occasionally wondered if we were perhaps giving too much prominence to women’s negative experiences and failing to give sufficient attention to instances where women had reported positive care experiences. This led us back to reading and, in some instances, re-coding the original papers, and this prompted us to develop a more nuanced approach to understanding women’s care experiences.

Second, the analysis process also explicitly drew on the expertise within, and challenge from, the project team. Team members were sent exemplar papers to read before meetings, so that our discussions were grounded in the papers and hence enabled challenge and conceptual development of the initial interpretations of Ritah Tweheyo and Catrin Evans. The same approach was used during consultations with the PAG. However, this consultative process was not always straightforward, as all involved had vast experience and strong views. At times, we had to step back and remind ourselves to base our interpretations on the data from the included papers and not on our own wider experiences.

Third, once the descriptive and analytical themes had been finalised by the project team, we organised a national research stakeholder engagement event in which the draft review findings were presented. Over 65 people attended this event, representing FGM/C survivors, FGM/C activists, community organisations with FGM/C as a remit, academics, researchers, midwives and general practitioners (GPs). Their inputs contributed to the report in four important ways: (1) to explore the credibility of the key findings, (2) to put these into the contemporary UK context, (3) to identify gaps in evidence/understanding and (4) to put forward key implications/recommendations for service development and future research.

The nature of stakeholder validation in the context of a review is controversial and poorly described. 158 Generally, non-author stakeholders have not necessarily read the included papers and thus are not directly familiar with the underlying research findings; they may or may not have direct experience of the issues to which they pertain, hence there is some debate over their ability to ‘validate’ the emergent themes. Therefore, as suggested by Booth et al. ,148 we used our stakeholder event to challenge our interpretations as well as to explore the credibility of our findings. After each of the review presentations, stakeholders were asked to comment on the questions in Box 4.

The feedback from the event was reassuring in that there was a very strong sense of validation of the findings. When participants indicated that they had found a theme surprising, we returned to that theme and re-examined it. For example, two of the descriptive themes in review 2 (around professionals’ experiences of deinfibulation and reinfibulation) were rewritten in a more nuanced manner as a result of this process. Participants had felt that further detail and country-specific exploration was required in these themes, as they felt that in the UK context, professionals would know the relevant laws and would not experience the ambivalence described. Likewise, participants noted a number of perceived omissions (e.g. nothing on the impact of mandatory reporting and little on mental health issues), which, again, prompted us to go back and check that these were actual omissions in the evidence and did not reflect errors in the review process. Some comments helped us to analyse the findings in more detail (e.g. one participant asked how the policy and legal context around FGM/C in different countries might have influenced the findings). The event was also used to elicit suggestions for the implications of the review (see Appendix 14 for a full description of the stakeholder event).

Finally, in order to capture feedback from medical practitioners (a group that had been largely absent from the national event), the review findings were then also presented to a group of 30 obstetric and gynaecology registrars during one of their training days. This group included doctors working in cities with a relatively high prevalence of FGM/C as well as some working in settings with a very low prevalence. The subsequent discussions of their own experiences showed a very high level of congruence with the findings of review 2 (at least within the English context), and further helped to shape the implications from a medical perspective (see Appendix 17 for detailed feedback from this group).

Summary of the review process

Figure 2 provides a clear depiction of all of the steps in the review process.

FIGURE 2.

Flow chart of the review process.

Characteristics of studies in review 1

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

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

See Appendix 6 for a detailed summary of study characteristics.

Methodological quality of included studies

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

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

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

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

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

Review 1 themes

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

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

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

Summary, reflections and conceptual model of analytical themes

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

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

FIGURE 3.

Review 1 conceptual model of analytical themes. Reproduced from Evans et al. 139 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/.

Reproduced from Evans et al. 139 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/.

The CERQual assessment

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

Discussion of review 1

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

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

Limitations and evidence gaps in review 1

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

Relevance to the UK context

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

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.

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.

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.

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.

Synthesis 1: health-care-seeking around female genital mutilation/cutting

There are multiple interlinked factors that influence whether or not a woman seeks out health care in relation to having experienced FGM/C. These factors, described in the following sections, can operate as barriers or facilitators depending on a women’s life stage and family/community context.

Synthesis 2: identifying and talking about female genital mutilation/cutting

Once a woman has sought care, the initial identification of, and discussion about, FGM/C is ‘hit and miss’ and is affected by communication challenges and prevailing organisational processes. The challenges and their consequences are described in the following sections.

Synthesis 3: clinical management and care experiences

Clinical management of FGM/C can be stressful and difficult for both women and providers owing to challenges in achieving a sense of cultural understanding and safety. The nature and quality of experiences are strongly linked to the level of cultural and clinical competence and professional behaviour of the provider, as indicated in this section.

Synthesis 4: configuration and resourcing of services

Approaches to service provision for FGM/C were not well described but appeared to be highly variable.

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.

Culturally safe service delivery and service configuration

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.

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).

Dissemination of the reviews

Activities undertaken to date include:

• publication of the review protocol117

• a national stakeholder event

• presentation to obstetrics and gynaecology registrars across the East Midlands region

• two oral presentations at an international conference in Montreal, Canada, on 28/29 May 2018 [2nd International Expert Meeting on Female Genital Mutilation/Cutting: Sharing Data and Experiences, Improving Collaboration; www.fourwav.es/view/644/info/ (accessed 12 July 2019)]

• two publications (one from each review) in international peer-reviewed journals. 139,145

Knowledge translation and impact

• The review findings have been shared with the Nottingham and Nottinghamshire joint FGM/C steering group. A health task force has now been established, with a first meeting in July 2018 to consider how to implement the review findings.

• Two members of the review team (CE and JA) have been invited onto the project oversight committee of a recently funded NIHR HTA research project being conducted by a team at the University of Birmingham [HTA 16/78/04; Female Genital Mutilation: a qualitative study exploring survivors’ and health-care professionals’ views on the timing of deinfibulation surgery (FGM/C Sister Study)].

• The project has led to research capacity development within the team. Valentine Nkoyo has started a PhD at the University of Nottingham focusing on FGM/C prevention as part of its pioneering ‘Rights Lab’. Juliet Albert has received funding from the Health Education England/NIHR Integrated Clinical Academic Pre-doctoral Clinical Academic Fellowship to develop a PhD application on FGM/C.

Acknowledgement of the Project Advisory Group

We gratefully acknowledge the invaluable contributions of our PAG:

• Ms Kinsi Clarke, Nottingham and Nottinghamshire Refugee Forum, Co-founder of Nottingham FGM/C survivor’s group

• Professor Jim Thornton, Consultant Obstetrician, Nottingham University Hospital Trust and University of Nottingham

• Dr Phoebe Abe, GP, London

• Ms Amanda Wickham (FGM/C Specialist Midwife), Nottingham University Hospital Trust

• Ms Helen Denness, Consultant in Public Health, Nottingham City Council

• Ms Grace Brough, Insight Specialist (public health), Nottingham City Council, Chair of Nottingham and Nottinghamshire FGM/C Steering Group.

Contributions of authors

Dr Catrin Evans (Associate Professor, Health Sciences) was principal investigator, initiated the project and oversaw all stages, led the interpretation/synthesis phases and drafted all chapters of the report.

Dr Ritah Tweheyo (Research Fellow) contributed to all stages of the review and led the data extraction, coding, quality appraisal and CERQual components.

Dr Julie McGarry (Associate Professor, Nursing) acted as a second reviewer for quality appraisal, contributed to the evolving synthesis and assisted with drafting the report tables.

Ms Jeanette Eldridge (Information Specialist) designed the literature search strategy, advised the team on all aspects of information retrieval and undertook the main database searches.

Ms Juliet Albert (FGM/C Specialist Midwife) provided clinical expertise and expertise relating to professional training and the UK policy context, contributed to the evolving interpretation/synthesis and contributed to formulation of the implications and recommendations.

Ms Valentine Nkoyo (Director of Mojatu Foundation, FGM/C, women’s rights activist and Co-founder of Nottingham FGM/C survivor’s group) was involved in the project from its inception, contributed key insights from a community perspective, contributed to the evolving interpretation/synthesis, helped organise the national stakeholder event and contributed to formulation of the implications and recommendations.

Professor Gina Higginbottom (Professor, Ethnicity and Community Health) acted as a second reviewer for quality appraisal, contributed to the evolving synthesis and provided methodological expertise.

Publications

Evans C, Tweheyo R, McGarry J, Eldridge J, McCormick C, Nkoyo V, Higginbottom G. What are the experiences of seeking, receiving and providing FGM-related healthcare? Perspectives of health professionals and women/girls who have undergone FGM: protocol for a systematic review of qualitative evidence. BMJ Open 2017;7:e018170.

Evans C, Tweheyo R, McGarry J, Eldridge J, Albert J, Nkoyo V, Higginbottom G. Crossing cultural divides: a qualitative systematic review of factors influencing the provision of healthcare related to female genital mutilation from the perspective of health professionals. PLOS ONE 2019;14:e0211829. https://doi.org/10.1371/journal.pone.0211829

Evans C, Tweheyo R, McGarry J, Eldridge J, Albert J, Nkoyo V, Higginbottom G. Seeking culturally safe care: a qualitative systematic review of the healthcare experiences of women and girls who have undergone female genital mutilation/cutting. BMJ Open 2019;9:e027452.

Data-sharing statement

All data requests should be submitted to the corresponding author for consideration. Access to available anonymised data may be granted following review.

Disclaimers

This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Health and Social Care. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Health and Social Care.

Ovid MEDLINE In-Process & Other Non-indexed Citations and Ovid MEDLINE

Date range searched: 1946 to present.

Date searched: 4 August 2017.