Female genital mutilation (FGM) is a practice whereby female infants or young girls undergo a procedure that involves partial or total removal of the external female genital organs, or any other injury to the female genitalia for non-medical reasons; the practice is deemed a violation of the human rights of women and girls (World Health Organization (WHO), 2018).
The WHO (2018) classifies FGM into four main types: type 1 (clitoridectomy) which involves partial or total removal of the clitoris and occasionally the prepuce; type 2 (excision) involves the partial or total removal of the clitoris, the removal of the labia minora and may include removal of the labia majora; type 3 (infibulation) involves the narrowing of the vaginal opening by the formation of a seal, which includes incising and repositioning the labia minora and majora with or without removal of the clitoris; and type 4 (other), which comprises of any harmful procedure to the female genitalia and may include nicking, scraping, piercing or pulling or elongating the labia.
All of the procedures have short and long-term consequences especially since the procedure is usually carried out with no anaesthetic or pain relief, without consent and using implements such as razor blades, scissors or knives with minimal attention to hygiene. The short-term consequences include haemorrhage, severe pain and genital swelling, urinary retention, injury to adjacent organs and tissues, fractures or dislocation because of forcible restraint, emotional and psychological distress, wound infections (including hepatitis B and C and tetanus) and death. Longer term physical consequences are often categorised as gynaecological or urinary difficulties. Physical issues include painful urination, vaginal discharge, painful menstruation, pain during intercourse, increased risk of complications during childbirth such as excessive bleeding, and obstructed labour leading to the need for a caesarean section. Psychological problems include anxiety, low self-esteem and post-traumatic stress disorder as well as relationship problems with their partners or mothers (Andro et al, 2014; WHO, 2018).
The practice of FGM is concentrated in the countries that border the Atlantic coast from North Africa to the Horn of Africa. It is also practised in Indonesia and Malaysia, and in the Middle East in Iran, Oman, Iraq, Yemen, Saudi Arabia and the United Arab Emirates. There are also cases in India and Columbia in South America. The practice can be found in communities in North America, Europe and Australia because of migration (UNICEF, 2016).
While FGM is illegal in the UK and many countries around the world, migrant and refugee women as well as girls from practising communities born in the UK are at risk (Rights of Women, 2015). Nurses have a mandatory duty to screen women and safeguard girls who they consider to be at risk so they can support them and refer them to appropriate services within the NHS (HM Government, 2016).
The NHS prides itself on being available for all but many individuals may be reluctant to access healthcare because of their undocumented or migrant status or their cultural health beliefs (HM Government, 2018).
In England and Wales, the most recent figures suggest that at least 60 000 girls aged 0–14 years were born to mothers who had undergone FGM; approximately 103 000 women and girls aged 15–49 years and 24 000 women aged 50 years and above who have migrated are living with the effects (Macfarlane and Dorkenoo, 2015).
Because of the sensitivity of the subject area, some researchers have had difficulties recruiting participants (Pereda et al, 2012) especially since many are refugees or migrants. The issues surrounding migration and the process of acculturation also have psychological health consequences (LeMaster et al, 2018). Individuals may be fleeing war or violence and have multiple losses such as home, livelihood and family members, as well as experiencing a sense of uncertainly because they are undocumented (Beck et al, 2017).
This study (which is part of a larger research project) aimed to explore the experiences of women who were living with FGM and had accessed care from the NHS.
Aims
The aim of this study was to explore the views of women who have recently accessed NHS care and belong to communities that practise FGM.
Design
A qualitative design of data collection and analysis was used. The framework method of qualitative data analysis has seven stages and has been used successfully in health service research for almost 30 years (Gale et al, 2013). The seven stages of the analysis procedure are: transcription of audiotaped interview; familiarisation with the transcript and field notes; coding of particular incidents or emotions; the development of a working analytical framework; and later applying the framework; charting data into a framework matrix; and finally interpreting the data (Gale et al, 2013).
Rigour and transparency were facilitated by support with data analysis and mapping from a colleague within the division of nursing, midwifery and social work.
Participants
Two local community associations acted as gatekeepers, kindly supported the project and helped to recruit potential participants. The participants were women over the age of 18 who had experienced FGM (type 2 and type 3), were fluent in spoken and written English and were willing to be interviewed about their recent experiences of NHS care.
Data collection tools
Semi-structured interviews were undertaken in a room in the two community associations' premises, both of which are based in the north-west of England. The interviews were audiotaped and field notes made. The interviews took place between January and June 2016. The data collection ended once no further patterns emerged.
Ethical considerations
Ethical approval was obtained from the university research ethics committee (15484).
Data collection procedure and analysis
All participants were given a participant information sheet and consented to take part in the study. Once consent had been obtained, the face-to-face interview was conducted (in English) in a private room within the community association offices at a mutually convenient time. The interviews were audiotaped and field notes were taken. The audiotapes were transcribed by a confidential transcription service recommended by the University of Manchester.
The women were asked a number of questions relating to their recent experiences of NHS care including their health concerns and why they had sought help, how NHS staff had been able to support them and if they had ever been asked about FGM. The women were asked if they had any suggestions on how healthcare staff could support them, especially in relation to asking about FGM.
The choice of questions arose from the available literature and recently released policy guidelines.
A debrief was offered following the interview by the author and a distress protocol was in place so women could obtain specialist help following the interview.
Findings
The nine women who participated in the study were aged between 20 and 46 years; eight of them had children.
All of the women had been born overseas with the exception of one who was born in the UK. Their countries of origin were Nigeria, Sierra Leone and Somalia. England was the second European country they had lived in because they had initially sought asylum in Scandinavia or Holland, and two participants were in the process of seeking asylum.
The interviews were between 45 minutes and 2 hours in duration and were audiotaped, and field notes were made by the author. The interviews were undertaken in English since there was no funding available for translation services. The interviews were carried out between January and June 2016.
Three main themes emerged from the data: involvement with healthcare professionals; silent suffering; and compassionate communication.
Theme 1. Involvement with healthcare professionals
When the participants were asked about their recent involvement with the NHS, the majority mentioned taking their children to a GP or local hospital. It appears their children were their primary concern; the women then mentioned their birth and pregnancy experiences.
Most of the participants were grateful for the care they had received and were rather reluctant to offer criticisms. One participant made some general comments about receiving supportive care while giving birth to her youngest child but added that this experience had not been consistent.
‘I feel the NHS as a whole is something that the country prides itself on … free healthcare. But I feel like there are a lot of improvements that need to be made within the NHS itself … because I feel it's … The care within the NHS itself is not something that is consistent.’
Other concerns regarded contact with NHS personnel were closely associated with gynaecological investigations, especially papanicolaou (pap) smears.
‘She didn't ask me [about FGM]. She just said: “It's going to take a short time. It's not going to be [painful] … It's going to be quick.” And I will cooperate with her how to adjust myself but I was panicking … because each time I remember what happened to my vagina. I used to be scared because of the bad experience I had in Africa.’
‘It was one of the nurses that actually did that and I was so fearful because anything that has to do with my private parts, I don't really like anybody really touching … I was really, really scared and I was shaking but she does not know that maybe I've had, you know, that makes me … that makes that part of me sensitive.’
There appears to be a lack of awareness and ability on the part of nurses in recognising and discussing the concerns these woman had in regard to having a smear and the pain it may cause, especially with these two participants who had experienced type 3 FGM. It may also indicate how difficult it is for some women living with FGM to discuss their worries with nurses and other health professionals.
Seven women had never been asked or any enquiries made in relation to them being cut or circumcised. One participant, who had lived in Norway for 17 years and given birth to her sons there, had never been asked.
‘They thought I had been born with it … they didn't know it was something I'd gone through.’
The staff appear to have considered the type 3 FGM as being a congenital condition.
However, other participants had experienced sensitive care from knowledgeable practitioners. One participant was questioned by a male doctor with whom she had a good rapport.
‘He said: “Have you had FGM?” When I said yes, he was like OK … And then he said: “I just need to know, like … if, anything goes … during your labour, or whatever, I just need to be informed and that's it”.’
There appears to be a reluctance on the part of the women to discuss any intimate procedures they had experienced within the NHS. It also appears many NHS staff are extremely reluctant to broach the subject of FGM.
Theme 2. Silent suffering
The second theme was the silent suffering that many women experience after having been cut or circumcised. The majority of the women who took part in this study remember the circumstances and the physical, psychological and relational consequences.
One participant's comments summed up many ongoing concerns.
‘To be honest with you, sometimes you don't look at it as a culture clash—you look at the root causes. Perhaps, if it wasn't that way back from my country or my own culture, maybe I shouldn't have felt this way. It's not just the childbirth—it goes a long way, even having intercourse. A lot of times, we are in this every day. It's a silent suffering which most women don't talk about but it is killing.’
An important observation about language and the difficulties that many women face when accessing NHS care was made by this participant. It also highlights the lack of insight that many nurses have into the struggles many women who are migrants face.
‘And because of English being our second, third or fifth, sixth, seventh language, you don't speak like me. That's what I'm facing. Most of my colleagues think, “Oh, she doesn't speak like British” … I say, I'm not a British; I'm a [country of origin]. So it's a privilege for you guys to understand English and it's a privilege for me to understand British English. You can never speak [country of origin], which I'm proud of, so just cope with my English.’
Sexual difficulties and a lack of sexual pleasure were frequently mentioned concerns.
‘Even today … having intercourse, I don't like it. I don't … I have no … I have not enjoyed sex before. I have not enjoyed it, but what I know is that the person that will have sex with me might enjoy me but I … I don't enjoy it … because of the past bad experience I have from Africa.’
A number of participants had been married but the relationship had failed partly because of sexual and intimacy difficulties.
There were also instances of women experiencing urinary difficulties.
‘You know, I will wait until my bladder is full, get that urine, you have to squeeze it out, coming out, because the whole … From the top up here … down, everything is a mess, it's such a pain. So the wee coming out is so painful. I had to squeeze the leg like this … actually to run down, you know.’
In addition, of the nine women who participated in this study, seven indicated some psychological distress that was often closely aligned to the actual genital mutilation taking place.
While it appears that some women had no recall and considered the procedure to have taken place when they were very small, the majority had been cut or circumcised between the ages of 7 and 12 years.
‘The saddest I've ever been recently was when I started looking at the picture of kids that, you know, were circumcised and that takes me to my own experience when I was young and I was like … You know just imagine the dirty hands, the blade, and all that, and how I was someone … And I was suddenly crying. I felt so emotional and that I started crying and I just picked myself up …’
Coping with psychological distress also appears to be self-managed and kept secret, possibly because of the stigma associated with any perceived mental illness within certain communities.
‘And sometimes that's a real tricky one, because it can—how can I put it? People can carry on suffering—do you know what I mean?—and struggling with things when there may be help available, but I guess it is about—how can I say? … Well, especially in my community …. The community would kick you out all right … I keep myself to myself.’
One woman admitted to being depressed,
‘I have felt really depressed at some point that I suspended my course at university for a year because I don't even know … I was in a really dark place … I was so down I couldn't cope. I wasn't sleeping at night, I wasn't eating properly … I was just … I was crying most of the time … I was so worried so I took myself out of the situation.’
The silent suffering appears to be an acknowledgement that little external support can be given but also a recognition of individual coping strategies.
Theme 3. Compassionate communication
The final theme embraces compassionate communication and key factors that could help health professionals, especially nurses, to start a dialogue regarding FGM with women from practising communities. Three areas were highlighted: the setting or context; non-verbal and verbal communication; and the need for nurses and midwives to have knowledge of the cultural setting.
All the participants were adamant that women should be asked about FGM and they were clear that the practice and suffering had to end. Two participants had daughters who they were trying to protect from the practice but were living with other family members in the UK or in Africa, and their status regarding asylum was also uncertain. The majority of women considered themselves as survivors.
‘… because it's still practised back home. I know it's illegal but it's still practised … And there are children who live here who live with the problem, but nurses need to be quite sensitive around this in terms of shock tactics to children to make them feel what they've been through is disgusting and things like that.’
A number of participants indicated a reluctance to discuss FGM, partially because it was a private matter and may reactivate old memories.
‘… because sometimes, if you go straight for the question, some people will never tell the truth. Sometimes they feel intimate details, sometimes they feel inferior. Sometimes they just click into that suffering … Just come on and set them up and they will not open up … Some people just, no, I don't want to say about it, because for the whole day you stay with that memory again …’
Establishing a rapport and being able to empathise was deemed essential, together with a duty of care towards a person.
‘You know, I think, if they can just be a little more, show a bit more empathy, I would say.’
A significant number of women emphasised the need for nurses to be culturally aware and have far more up-to-date knowledge around the subject of FGM.
‘You know, like they would be more sensitive to be given that room to feel supported to be able to open up. Yeah, I understand you are from a different background, but what you're telling me I could just kind of … If you don't mind if I can just find out a little more.’
From these results, the three main themes that emerged within the individual interviews highlighted the importance of knowledge, the style of communication and how the women did want to be asked about FGM.
Discussion
Involvement with health professionals
The initial theme considered the women's involvement with health professionals and if they had been asked about FGM. Since eight of the nine women had given birth, it is understandable that the main contact women had with the NHS involved children, maternity and gynaecological services.
There appeared to be a reluctance to make any criticisms of the NHS. The issue giving rise to most concern was a lack of consistency when dealing with NHS staff; some participants considered staff to lack knowledge about caring for women who have experienced FGM.
Many women described their experiences while attending for a routine cervical screening test. The United Nations (2016) suggests cervical cancer is the most frequently occurring cancer in women from developing countries and, since the majority of women participating in this study were refugees, attending cervical screening requires courage and should be encouraged. The mixed experiences of women when attending cervical screening highlights nurses' lack of knowledge of FGM and its consequences. There is an expectation of pain (especially in women who have type 3 FGM), together with a stigma associated with cancer (Azerkan et al, 2015) and language concerns (Gele et al, 2017).
Cultural and language difficulties appear to have influenced the interaction between the healthcare provider and the client. One example was a male obstetrician who enquired about FGM and provided reassurance and sensitivity. Since obstetricians and midwives appear to have the most contact with women in this group, it is crucial that up-to-date knowledge of FGM is maintained and culturally sensitive communication is undertaken.
Silent suffering
The theme of silent suffering is related to the ongoing consequences of being cut or circumcised and how this affects participants' physical, psychological, relational and sexual health. There are examples of perceived stigma in relation to talking about the psychological consequences, especially in relation to depression.
The physical consequences of FGM included a profound impact on the women's sexual functioning and this is supported by research (Andersson et al, 2012). Many openly spoke of frequent dyspareunia, and low sexual desire and satisfaction. Studies by Abdulcadir et al (2015) and Elneil (2016) support these findings. Relationships with partners and husbands suffered and it was notable that a large proportion of the women who took part in this study now lived alone.
The psychological consequences of FGM have been well documented (Knipscheer et al, 2015; Köbach et al, 2018). There are examples of post-traumatic stress disorder in light of flashbacks and vivid recollections of the childhood trauma women had experienced. However, there is a stigma associated with experiencing mental health problems and lack of adequate support (Costello, 2015) from within the women's communities. Some of the women had sought and received help, yet a number of them appeared to struggle with low mood and possible depression.
This area of care is likely to be a difficult issue not only for the women themselves to divulge and appropriate treatment or support to be offered but also for nurses to identify in a sensitive manner.
Compassionate communication
The final theme was that of compassionate communication and all nine participants were adamant nurses should ask about FGM. Since October 2015, all teachers and healthcare practitioners in England and Wales have had a safeguarding mandatory duty to report any case involving a woman under the age of 18 years who is at risk or if they observe physical signs that may indicate FGM has taken place. It is also a mandatory duty for healthcare providers to record the presence of FGM in a patient's healthcare record—yet it is clear many of the women in this study had not been asked about this.
The issue that was most strongly emphasised was that of nurses and other health practitioners having sufficient knowledge of the cultural setting and to ask questions in a sensitive manner when caring for women from communities that practise FGM. Suggestions of the most appropriate factors to take into consideration when broaching the subject included: the need to create a dialogue; to take care with setting; the need for privacy and the maintenance of modesty; the importance of developing a rapport; and to take sufficient time. The importance of verbal and non-verbal communication was also emphasised.
Recent research has highlighted poor levels of knowledge and missed opportunities by nurses to offer support (Dawson et al, 2015; Moxey and Jones, 2016).
Finally, all the women who participated were clear the practice and suffering had to stop. The women all considered themselves survivors.
There are limitations to this study primarily in that only women who were fluent in written and spoken English were recruited. The participants were recruited from two community groups in the north-west of England and this, again, may limit the variety of experiences of women who have undergone FGM.
Conclusions
The women who participated in this study had a variety of experiences when accessing NHS care; this primarily involved seeking care for their children followed by gynaecological and obstetric experiences. They all had ongoing healthcare needs following FGM around physical, psychological and relational difficulties. However, it appears these women were rarely asked about FGM by midwives, gynaecological nurses and practice nurses despite recent recommendations. The women made a number of suggestions of how nurses may be able to start conversations regarding sensitive topics but were adamant the women should be asked. It appears crucial that nurses and midwives develop their knowledge and awareness of FGM to provide culturally competent care.
Future work needs to be undertaken in relation to knowledge and awareness of FGM in nurses who care for clients/patients from practising communities within general, mental health and learning disability settings. The provision of providing culturally sensitive care in undergraduate and postgraduate nursing curricula also needs to be explored.
Further work involving a wider group of participants including those in a more urban setting or who have recently arrived in the UK and using an interpreter may offer further insights into the needs of women affected by FGM.