‘Some women are proud of their experience and I have to respect that’: an interview–study about midwives’ experiences in caring for infibulated women during childbirth in Sweden

KEYwords: Female genital mutilation; challenges; infibulation; midwife; labour.

Female genital mutilation or ‘cutting’ (FGM/C) includes all procedures that involve 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 commonly practiced on young girls, usually in early childhood and up to the age of 15 years. There are several types of FGM/C and it is most commonly performed in the north-eastern regions of Africa.²

Sweden has a large number of migrants from countries with a high prevalence of FGM/C and it is estimated that nearly 40,000 girls and women may have been subjected to some form of FGM/C before migrating to Sweden.³ Infibulation includes narrowing of the vaginal orifice with or without excision of the external clitoris, and these procedures may have negative long-term health effects for affected women.^1,4 Infibulation can leave psychological scars and a fear of childbirth, be a trigger for depression and anxiety, and lead to reduced quality of life.^5–7 As infibulation causes narrowing of the vaginal opening, it might lead to prolonged labour, which also can increase the number of episiotomies, perineal tears, Caesarean sections and instrumental deliveries.^4,7–12 Complications related to infibulation are more common in areas where access to maternal care is limited, but it has also been shown that in countries with insufficient integration policy, there are increased health risks for pregnant women and children.¹³

Infibulated women may need the scar from the narrowed vaginal opening to be released (called de-infibulation) to facilitate childbirth. De-infibulation could be performed at the time of delivery, but requires the involvement of competent and experienced staff.^14–16 Previous research has shown that many health-care professionals feel that they do not have sufficient knowledge to perform de-infibulation.^17–22

The National Board of Health and Welfare in Sweden also recommends that infibulated women should be offered de-infibulation during the second trimester.³ During antenatal visits, women who have been infibulated could be identified and, if needed, referred to another clinician for further care.³ However, a recent literature review found that health-care professionals, including midwives and other clinicians in Sweden, were unsure of how to talk to women about FGM/C, and therefore avoided the subject altogether. As a result, a high number of infibulated women lacked information on post-exposed FGM/C experiences.¹⁸ Good communication affects relationships between women and midwifes; it is important for women that the midwifes have full focus on them.¹³

The aim of this study was to describe midwives’ experiences in caring for women post-exposed to FGM/C during labour to gain deeper understanding of possible challenges for midwives working in delivery units in Sweden.

This study was explorative with a qualitative design, and interviews were used to collect data, which were analysed by means of a thematic analysis.²³ Individual semi-structured interviews were used to collect data to explore midwives’ experiences of caring for infibulated women during labour.

The study was conducted during January and February 2019. The interviews were conducted in three different regions and respondents were recruited from five different delivery units in Sweden. The final sample consisted of six midwives. The age of respondents varied between 30 and 57 years. The midwives’ work experience ranged from 1 to 30 years. All the involved midwives had experience in caring for infibulated women from their work in the delivery unit, which was the single eligibility criterion for the respondents.

A pilot interview with an external midwife was performed before study recruitment. The pilot interview is not included in the final cohort.

An email with information about the study was sent to managers at three different delivery units in Stockholm. At the same time, information about the study was shared on relevant internet forums. Individuals who were interested in participating in the study contacted the authors via email. Information about the study was provided and verbal and written consent was obtained from the respondents. Respondents were given the opportunity to ask questions regarding the scope of the study before consenting to participate.

Data were collected through individual interviews. A presentation before the interview explained the roles of the interviewers and information about the study was given. For each respondent, a convenient time for the interview was arranged. Three interviews took place through a face-to-face meeting between the interviewee and the authors. Due to distance and remote locations of respondents, the other three interviews were conducted by telephone. A semi-structured interview guide was used. The guide consisted of five open-ended questions (Supplementary File S1). The interview guide worked as a support during the interview and individual follow-up questions were asked at each interview. Interviews were recorded and transcribed verbatim. The length of the interviews varied between 30 and 55 min.

Thematic analysis was used to identify patterns in the collected interview data, from which themes were identified.²³ The use of thematic analysis incorporated a framework analysis approach, which has five key stages. The first two stages include familiarisation; identifying a thematic framework was part of the analysis to guide the authors. In the familiarisation stage, coding was developed jointly by the authors. The authors used coding strips to determine the level of intercoder agreement, a process enabling comparison, discussion and agreement for the third stage. After the material had been transcribed by the researchers, the interviews were reviewed again, both together and individually, to ensure that the transcribed texts were consistent with the interviews and to ensure a clear audit trail of the process. The resulting codes were used as starting points for creating possible themes. This was done using ‘Mindmaps’ to identify codes that shaped correlating themes. In the final stage of the analysis process, the researchers reflected on the importance of each theme, using executive summary statements as the foundation for the results, and the final themes were selected. This ongoing process delivered complete consensus at the end of the analysis (Supplementary File S2).²³

Trustworthiness in qualitative research is based on conformability, dependabiliy, credibility and transferability.²⁴ For confirmability, an open dialogue was established and verbatim quotations were presented. Dependability can be confirmed by replicating the study using the same topic guide. Credibility is ensured by a transparently detailed description of the process and the inserted quotations. Transferability refers to the extent the findings in this study are likely to be the experience of other midwives in other comparable obstetric environments.

There was a generous sharing of experiences by the participating midwives. Two main themes were identified: challenges in providing appropriate care during labour; and midwives’ emotional experience.

Midwives highlighted the need for clear guidelines at both antenatal and maternity delivery units. The lack of, or insufficient, guidelines made the midwives’ work more difficult, which could create a feeling of insecurity. The midwives found that the guidelines at their delivery units were sufficient; that is, they said they relied on their own intuition and personal work experience and they tried to create a situation that they understood would be more comfortable for the women. Insecurity regarding the ability to provide appropriate care was also expressed by the midwives, especially regarding labours that resulted in an adverse outcome (eg rupture of the sphincter muscle).

‘Insecurity. A bit afraid of causing the woman more pain, but I had my more experienced colleague beside me. That was lucky because I was a bit shaky the first time I was about to do the cut. I had not even performed an ordinary cut’. [Midwife 4]

The presence of scar tissue was thought to complicate the handling of infibulated women’s labour. One participant said that she was more vigilant about how the tissue reacted to pressure from the baby’s head and was prepared to hold perineal protection.

Good communication between the midwife and the woman during labour was crucial in order for midwives to counteract a larger rupture. They described it as a complicated situation with more risk factors than a normal labour. Some participants feared that the women might have experienced the infibulation under traumatic circumstances and had psychological scars from this, further emphasising the need for good communication. One factor raised by the midwives was that it is sometimes neither practical nor possible to have an interpreter present during the entire delivery.

The midwives expressed sharp criticism that antenatal care clinics had not identified these women at any previous visits. Talking about infibulation was also described as quite a difficult conversation to have while a woman is in active labour and clearly has her focus elsewhere. Participants all reported that organisational factors and lack of guidelines about perinatal care for women post-exposure to FGM/C was the core of the problem.

‘… One should not miss an infibulated woman at antenatal care. That shocks me.’ [Midwife 3]

In all interviews, the midwives talked about the emotions their encounters with infibulated women aroused in them and that they had different strategies to deal with these emotions. They further expressed concerns about the women’s emotional experience from labour, which goes beyond the risks of physical impact. Midwifes described anxiety they felt when encountering some of these women; during childbirth, women’s experience is the central concern, and not being capable of giving the best possible care is something that affected their work life negatively.

In all interviews, the midwives talked about what emotions the encounters with infibulated women aroused in them and that they had different strategies to deal with these emotions. They further expressed concerns about the women’s emotional experience from labour, which goes beyond the risks of physical impact. Midwives also described the anxiety they felt when encountering some of these women, thus women’s experience during childbirth is the central feature. Not being capable to give the best possible care is something that impacted their work life negatively.

Lack of understanding why an infibulation procedure would even be performed was common:

‘I just feel for them, I cannot understand how you could do this to women and children. I just feel for them, I think many times that the men are suffering with them, and it is not those men who want them to be like this. Yeah, maybe the extreme (ones), but not these young guys.’ [Midwife 1]

‘Some women are proud of their experience and I have to respect that.’ [Midwife 2]

In one interview, a midwife talked about the difficulties she had in coping with emotions when she met infibulated women. She also described a meeting with a woman who did not even know that she was infibulated when she came to the hospital to give birth to her child.

‘I remember knowing and feeling deeply that it was so terrible for her that she had to go through this and that she had to be so frightened and violated in some way.’ [Midwife 5]

The two themes revealed could appear very separate. One theme focuses on lack of guidelines and the other focuses on emotions; however, these themes are highly related because of the frustration involved in caring for women post-FGM/C and also because these women were continuously given inadequate care. Increased immigration and significant differences in culture between their former country and their new country presents challenges when it comes to providing good quality care.^25–27

Policymakers in Sweden should acknowledge both the international agreements of minimum essential levels of satisfaction and the right to sexual and reproductive health, including access to care for women post-FGM/C.²¹ Even though the women’s perspective of care is outside the focus of this study, there are several studies exploring this topic in Australia, Canada and the US.^28–32 These studies commonly describe negative experiences of obstetric care reported by post-FGM/C women living in developed countries.

The results of the current study align with previous studies where the lack of basic guidelines specific for the care of women post-FGM/C causes uncertainty and lack of consensus about when and how communication about FGM/C should take place – leading to avoiding the subject altogether. As a result, women were admitted to the delivery unit in labour with no information in the appropriate medical records that she was infibulated.¹⁸ Increased immigration and physical differences present midwifes with challenges when it comes to providing good quality care.

This study has limitations. First, the invitation to participate was channelled through a letter to different delivery units in Sweden, which did not follow a specific sample collection of participants. This could have skewed the willingness to participate to a group that have a broader experience of caring for this specific group of women. During the whole process of analysing the data, the authors discussed the material continuously, which can be seen as a strength, but the influence of their own preconceptions could also, to some extent, have affected the interpretation of the results. The results of this study align with the results of earlier studies in the area, which gives the study credibility.

Table 1.  Example of the analytical process, from meaning unit to theme

The midwives in the study experienced several challenges in their encounters with infibulated women during labour. The experience for the midwives was negatively impacted by organizational factors and emotional distress because some women were not perceived to be given the appropriate care in regard to FGM/C. Policymakers in Sweden should consider implementing mandatory national guidelines on how to care for women post-exposed to FGM/C, ideally at an early stage in their reproductive life.

The study was performed in accordance with the Declaration of Helsinki and Swedish legislation on non-invasive studies (WMA, 2013; SFS, 2003:460, 2008:192). According to Act (2003:460) on the ethical review of human research (SFS 2008:192), ethical approval is not required for research studies conducted during advanced educational programmes, but all considerations in the study were made in accordance with ethical laws and guidelines. Participants were informed and gave verbal and written informed consent.

The authors declare no competing interests.

This research did not receive any specific funding.

CB and NG conceived the idea and wrote the proposal for the study. CB and NG collected the data, CB, NG, LL and AW analysed the data. CB and NG drafted the first manuscript and all authors read and continuously completed the final manuscript.