Integrated synthesis

In this chapter, we present an integrated synthesis derived from 78 publications in total for both reviews, representing 74 distinct studies. Fifty-seven papers representing 55 studies were included in review 1. Thirty papers representing 28 studies were included in review 2. Nine studies were common to both reviews.

Integration and synthesis were undertaken by juxtaposing the findings (analytical and descriptive themes) from reviews 1 and 2 and considering whether or not, by taking both women’s and professionals’ perspectives into account, they could be combined to produce integrated and novel insights. Four final syntheses (as illustrated in Figure 5) were formulated, which are able to (1) capture the meaning and complexity of a key FGM/C health-care-related issue or concept, (2) illuminate this and (3) propose its potential antecedents and consequences.

FIGURE 5 Formulation of integrated synthesis. (Figure not reproduced here; see the original article.)

The findings within each of the four synthesis domains are depicted in Table 9.

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.

Perceptions about female genital mutilation/cutting

For many women, FGM/C is perceived as ‘normal’ within their cultural context, hence they may not seek out care because they are comfortable in their own body and life situation and see no reason or perceive no need to seek help. This perception may change once they are exposed to anti-FGM/C discourses. Some women may then wish to seek out care (e.g. deinfibulation) because they wish to challenge or resist their own cultural norms and take control over their lives.

Knowledge about services

Women may not be aware of specialist support or services that can address issues related to their FGM/C (even when aware of mainstream services such as maternity services or GPs). This lack of awareness may be related to a lack of information about FGM/C and a lack of service availability but it may also be related to the fact that FGM/C and associated gynaecological, sexual or emotional problems are private, sensitive and taboo issues in many African cultures, and are rarely openly discussed within communities.

Experiencing symptoms

Women will usually seek out care only if they are experiencing acute symptoms or if they are pregnant. However, they may not initially make an explicit connection between their symptoms or medical issues and their FGM/C.

Family and peer influence

Choice of service may be influenced by women’s families, husbands and peer networks. Generally, women will seek help on the advice/recommendation of others and, if it relates to FGM/C, they would aim to seek help from a provider who they (or the community) trust and perceive as competent around FGM/C.

Cultural norms

Care-seeking choices (including around deinfibulation or reinfibulation) are strongly influenced by family members, by husbands and by cultural norms around the body, sexuality and appropriate female behaviour. Women may avoid seeking care owing to embarrassment or shame at having to discuss a private personal issue. They may particularly avoid male health-care providers. Within communities that practise FGM/C type III, there are strong cultural pressures to maintain premarital virginity and chastity, hence most women will avoid undergoing deinfibulation before marriage, even if symptomatic, unless their perceptions around FGM/C change. After marriage, decisions around deinfibulation (and requests for reinfibulation) are particularly influenced by husbands.

Previous health-care experience

Women may avoid seeking care related to FGM/C as a result of having had previous poor health-care experiences causing them to lose trust in the system. Conversely, previous positive experiences would enhance the likelihood of feeling that they can trust the provider/service and this would also enhance the likelihood of women recommending a particular provider or service to their friends/family.

Social circumstances

Some women are facing difficult life circumstances (e.g. in relation to immigration issues or personal histories associated with migration) and may not have the time or capacity to address issues around their FGM/C until/unless their more immediate needs are met.

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.

Communication challenges

Discussion about FGM/C is greatly hindered by language barriers and challenges with accessing appropriate interpretation support. This is further complicated by time pressures within consultations, which may inhibit the ability to talk about complex issues. In addition, as a sensitive and taboo topic, discussion about FGM/C is hindered by embarrassment and uncertainty. Women may feel embarrassed and/or fear being judged, and providers may avoid the subject because of uncertainty over how to talk about it, an assumption that women would mention it themselves if relevant or out of a desire not to offend or intrude. Hence, opportunities to identify and discuss FGM/C may be missed. Providers and women both mentioned that discussion is more likely if the provider takes the initiative to ask/talk about FGM/C rather than waiting for the woman to mention it. Open discussions about FGM/C (including deinfibulation timing) are more likely if the provider is knowledgeable and confident and exhibits cultural sensitivity and respect, and when a good patient–provider relationship has been established (e.g. through continuity-of-care models).

Organisational/system issues

Discussion about FGM/C is hindered if it is not part of routine organisational processes (e.g. providers being prompted to ask about FGM/C for record-keeping requirements or as part of routine questions during assessments). Even in an obstetric context, FGM/C may not be identified during antenatal care unless there are routine processes in place to ask about and record FGM/C status. In addition, it may not always be clear whose role or responsibility it is to undertake identification and management/counselling in relation to FGM/C, and hence it may be missed. Organisational barriers to adhering to existing processes include time and resistance due to the additional administrative burden.

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.

Seeking respectful care across cultural divides

Women reported experiencing a wide range of negative, discriminatory and insensitive comments and reactions from providers in relation to their FGM/C. These negative experiences caused great distress, with women reporting feeling objectified and humiliated and losing trust in the system/provider. Some women reported subsequently avoiding care (or avoiding mentioning FGM/C) as a result of their negative experiences. Providers, likewise, reported experiencing strong negative reactions to FGM/C. Many providers admitted that they found the issue difficult to deal with emotionally and felt unsure of how to respond to women and their families. Nonetheless, many providers did endeavour to treat women with compassion and empathy, and women were highly appreciative of situations in which they felt that they had been treated with respect, dignity and kindness.

Anxiety, apprehension and professional dominance

Some women were highly anxious and apprehensive about childbirth or vaginal examinations, and the experience of childbirth or vaginal examinations could trigger flashbacks of their original FGM/C and cause extreme emotional or physical reactions. In addition, some women were fearful of clinical interventions, such as caesarean sections, and of how deinfibulation would be managed. Women’s experiences of care in these situations was strongly influenced by the provider’s response. In some cases, providers appeared to feel that women were resisting their advice or ‘being difficult’ and challenging (especially if the family became involved) and confrontational situations could ensue, which were distressing for both providers and women and in which both parties struggled to exert some control. Indeed, women reported many care experiences in which they felt that they had lacked control and that had increased their anxiety. In contrast, in situations in which providers were able to build relationships with women and understand their fears and concerns, they were in a better position to provide appropriate information, support, appropriate family involvement and clinical management. Women expressed great appreciation of such care. Counselling support was recommended by providers for women experiencing psychological difficulties. However, there was a lack of evidence on the ways in which distress was identified by providers and on women’s subsequent experiences of psychological care.

Cultural understanding for shared decision-making

Many providers lacked knowledge of the cultural meanings associated with FGM/C and related bodily procedures (e.g. deinfibulation or reinfibulation), and this, coupled with language barriers, could make it difficult to achieve shared understandings or decision-making in relation to clinical interventions or management of birth. Providers sometimes made assumptions about women’s preferences for deinfibulation (or not) and sometimes found managing requests for reinfibulation challenging. There was a need for women to have more information and support in planning interventions such as deinfibulation and in adjusting to bodily changes following deinfibulation. These issues did not appear to be routinely discussed except in specialist centres or by highly experienced staff.

Being in safe hands

Both women and providers recognised that some providers lacked knowledge and skills around FGM/C, particularly in the management of birth and deinfibulation for women with type III FGM/C. In situations in which providers lacked knowledge, women felt anxious, unsafe and highly vulnerable and providers reported heightened anxiety and stress. Such situations were clearly linked to poorer care experiences, and some women reported avoiding care in the future as a result. In some contexts, there appeared to be a lack of clinical practice guidelines or clear care pathways, and providers reported that these were needed. Both providers and women identified that there was a need for in-depth provider training and skills development around FGM/C. Midwives in particular appeared to be uncertain about their skills in undertaking deinfibulation. Women reported seeking out providers who were known to be experienced in dealing with women with FGM/C, and expressed great relief and satisfaction when they were looked after by providers who appeared knowledgeable and competent.

Synthesis 4: configuration and resourcing of services

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

Role of specialists and specialist centres

The most positive experiences or recommendations were reported from approaches to care where there were specialist centres or where specialist expertise was available, with clear guidelines and referral pathways between services.

Addressing key barriers

Positive experiences were reported from approaches to care that sought to overcome language barriers, lack of knowledge or lack of trust in communities, including community outreach and engagement strategies, having trained interpreters, community-liaison workers and approaches that encouraged continuity of care.

Filling knowledge and service gaps

There were a number of issues related to service provision that were particularly poorly reported. Current service provision appeared to be strongly focused on clinical (physical) care. There was much less emphasis and evidence on mental health, although some providers clearly recognised it as a need. Likewise, there was relatively little focus on providers’ roles (apart from school nurses) in addressing FGM/C prevention either with young people directly or with mothers or families, although providers recognised that this was an important issue. Women and providers both reported the need for greater community engagement in prevention, information giving, awareness raising and care, but there was relatively little detail available on how this was being operationalised.