Care consumption is low, but rising
Previous reports (23, 24) have shown a relatively low consumption of care in light of the number of girls and women in Sweden who are estimated to have been subjected to FGM/C. The reports indicate that there may be an underreporting in the registry. These reports relate this low consumption of care to women subjected to FGM/C not seeking care, seeking care but not reporting their FGM/C status during their contact with the healthcare system, and failure of healthcare providers to ask sufficient questions about the topic. It may also happen due to previous negative experiences with healthcare visits. Reports (23, 24) shows that a total of around 2,000 women have been diagnosed with FGM/C and registered in the existing national registers during 2008–2012, most often in connection with pregnancy and childbirth. Results from this study show an increase in women who seek care among the target group for most healthcare regions during 2012-2018.
Still, the number of women seeking care and receiving diagnoses associated with FGM/C may be low compared to the 38,000 girls and women in Sweden who are estimated to have undergone FGM/C. The number of girls aged 0–17 and women over 50 who sought care and received diagnoses associated with FGM/C was low in both the PR and the MBR. This may indicate that these age groups either do not need care, do not have access to care and information about care, are afraid to seek care, or avoid seeking care due to fears of stigmatization. It may also be that women do seek primary or specialist care but are not registered with a FGM/C diagnostic code and therefore are not visible in the statistics. One Norwegian study (25) showed that only one-fifth of women who underwent FGM/C seek care. Women may void care due to infibulated women's low acceptance of defibulation before marriage, since infibulation is considered a sign of virtue and innocence. It may also be due to women’s lack of knowledge about FGM/C and their own bodies, as well as what kind of care is available. Women are unaware that there are care options, such as surgery, specialist clinics, and psychosexual counseling and treatment (26). Previous negative experiences with healthcare and unclear regulations and routines may be other reasons why women subjected to FGM/C do not seek care when they need it (26, 27). Good care meetings and encountering are also important factors that encourage women subjected to FGM/C to seek care. Care meetings allow healthcare providers to increase their knowledge about and experience with FGM/C (28-31) and establish better communication with women who have undergone FGM/C so that their patients can feel safe (32-34 ). This allows providers to ask questions about patients’ FGM/C status in a non-judgmental way and involve women living with FGM/C in their own clinical care (34-36). Healthcare providers should have the opportunity to offer transcultural and person-centered care and interpreters and written information should be available in the patients’ native language, if needed (35-36).
Care is most often sought in connection with pregnancy and childbirth
This study shows that the care measures and treatments offered to women who have undergone FGM/C most often take place in connection with pregnancy and childbirth. This is probably due to the fact that pregnancy and childbirth reveal an urgent need for care.
An earlier report from The Swedish National Board of Health and Welfare (16) shows that women born in sub-Saharan Africa have worse outcomes than other groups in terms of pregnancy complications, acute cesarean section, and stretch marks after childbirth. The report also shows that their children's Apgar scores are lower, and that perinatal death is more common. The report also draws attention to the high rate of sphincter rupture among women born in sub-Saharan Africa and mentions that it is sometimes associated with a presumably high proportion of women who have been subjected to FGM/C in this population (16).
Care measures
The WHO recommends three types of care for women living with FGM/C. Defibulation should be offered before or during childbirth; cognitive behavioral therapy (CBT) should be considered for those suffering from anxiety, depression or PTSD; and sexual counseling should be made available as an option to prevent or treat sexual dysfunction. Best practices relating to a fourth area were developed on an informational and educational basis. Health information about defibulation should be given to girls and women living with type III FGM. Caregivers have the responsibility of conveying information that is correct and clear by using language and approaches that the target group can understand. Practitioners who provide care for women and girls living with FGM/C should receive information on different types of FGM/C and their associated short-term and long-term health risks (7).
Most studies on care for women who have been undergone FGM/C concern surgery; defibulation, clitoral reconstruction, and cyst removal. An important question concerns the timing of defibulation -before or during childbirth - and how it should be performed. In order to be able to offer appropriate care, care providers also need more training on the technical aspects of defibulation and the use of defibulation as a treatment alternative to perineotomi for infibulated women during delivery. However, the lack of research on the timing of defibulation means that it is not possible to give any advice on when the procedure should be performed. Therefore, it is important that the issue of defibulation be discussed with women who have undergone FGM/C so they can be involved in the decision on whether, when, and how defibulation should be performed (37). This is in line with what previous research suggests: that healthcare professionals should ask specific and appropriate questions about defibulation and discuss the issue early in pregnancy so that women have information and the opportunity to discuss their care options. With such information, providers and women can plan for defibulation before or during childbirth, giving patients a better experience of safe and professional care.
Clitoral reconstruction is another operation with the potential to improve the health of women who have undergone FGM/C, especially in terms of sexuality, body image, and self-esteem. If clitoral reconstruction is offered, the women who opt for the surgery should be informed that existing research does not offer clear conclusions about the effects of the procedure. It is important that women be offered psychosexual treatment as an alternative to surgery (38-40).
According to the results of the present study, the forms of care offered in Sweden to women living with FGM/C consists of obstetric procedures, gynecological procedures, vulvar plastic surgery, and other vulvar or perineum reconstructions, which is in accordance with the WHO recommendations. Psychosexual counseling for women subjected to FGM/C should be improved.
Recording of codes needs to be improved
Across the country, the study found a wide range of practices in terms of recording diagnostic codes in patient records. This could be due to a lack of knowledge about the codes and how they should be used. A previous report (24) found that the quality of reporting in the registries (PR and MBR) varied between regions. That report stressed the importance of documentation in the patient record and noted that FGM/C was sometimes not documented in the patient record. Even the present study found areas for improvement in the recording of codes. Healthcare providers to not fully use the available opportunities to report using existing diagnostic codes. Because treatment measures are coded differently in different regions, and even within regions, it is difficult to calculate the number of measures provided with certainty. Among other things, it is unclear whether defibulation operations take place before or in connection with childbirth. The number of surgical procedures, such as defibulation and vulvar reconstruction, should be recorded in a more systematic manner. Such a uniform coding system, including the new code (TLF00 Defibulation - Opening surgery in FGM), that was introduced on January 2019, increases the possibility of reporting care provided to women who have undergone FGM/C. Including information about diagnostic codes in the guidelines could thus increase their usage and thereby increase the reliability of statistics.
Policies, Guidelines, Healthcare providers training and care measures that offers
One study (41) examining care for women who have been subjected to FGM/C in 30 different countries showed that of these countries, 24 had a national policy on care for women subjected to FGM/C, with 20 of those national policies having been fully or partially implemented. Twenty-four countries offered training on FGM/C for healthcare staff, including 14 Western countries. Systematic training for healthcare professionals is more common in countries where FGM/C is traditionally practiced, however. In terms of access to care services, the study reported two types of surgical care: defibulation and clitoral reconstruction, and two types of counseling, psychological and sexual. Defibulation was offered in 27 countries, but in some countries it was only available at private clinics, and then in connection with pregnancy and childbirth. Clitoral reconstruction was offered in 13 countries, of which 10 were Western countries. Seven of them offered clitoral reconstruction through the public healthcare system. Furthermore, only 13 countries provided specialized psychological and sexual counseling for women who had undergone FGM/C. For example, psychological and sexual counseling is readily available in France, where all relevant nursing education programs concern FGM/C in specific areas. The Netherlands also has good coverage. Nine special centers that offer psychological and sexual counseling for women who have been subjected to genital mutilation. In Sweden, counseling is offered to women who have undergone FGM/C mainly in connection with clitoral reconstruction (41).
Previous research has shown that in general, healthcare providers lack guidelines for treating patients with FGM/C, regulations and practices are applied inconsistently, care paths are unclear and poorly coordinated, communication between healthcare centers and hospitals is insufficient, and responsibility for different roles in connection with care for women who have undergone FGM/C is diffuse (25, 28, 30-32, 35). The results of this study show that local policy documents are primarily produced for midwifery clinics, obstetrics practices, and maternity care. It is particularly important that these clinics have guidelines, since childbirth is an occasion when complications due to FGM/C can occur. At the same time, it is not only during childbirth that this patient group may need care or information. As The Swedish National Board of Health and Welfare (24) has pointed out in previous reports, healthcare staff in all areas may need knowledge about FGM/C in order to offer effective preventive care. The results also show that existing guidelines often lack recommendations regarding psychosexual counseling.
Methodological limitations
The inventory was based on material submitted by coordinators or on consultation with those responsible for maintaining information. The inventory therefore reflects only the material received or available on webpages. It is possible that care units may have local guidelines and routines. The study did not search for such guidelines, and they are not included in the inventory.
A major methodological shortcoming had to do with healthcare reporting and registration of codes in the registries. Some healthcare units still use the old code Z90.7, which makes it difficult to obtain exact statistics. Additionally, providers need to use the new treatment code TLF00 (Defibulation - Opening surgery in FGM) to a greater extent in order to improve statistical reliability.
This study excluded the diagnostic code Z90.7, which may have led to an underestimation of the number of women subjected to FGM/C who sought care. The code was excluded because it is also used for groups other than women who have been subjected to some kind of genital mutilation.
Mapping care measures that are directly related to FGM/C before the new code begins to be used can be complicated. Defibulation for women who have been subjected to FGM/C type III could not be coded specifically in the MBR or the PR before January 1, 2019, when the new treatment code for defibulation (TLF00) was introduced. And there are no codes yet that allow researchers to study psychosexual counseling and treatment.
Previous report from The Swedish National Board of Health and Welfare (24) shows that the quality of reporting in the registries varies between different healthcare regions, and they point out the importance of documentation in the patient record. There are different coding routines, coding terminology, database structures, and medical record systems within the different healthcare regions. A lack of documentation can be associated with a lack of knowledge about FGM and time constraints in healthcare units. Most countries fail to systematically record FGM/C in their registries (41).
Diagnostic code Z91.7 is relatively new and will, to some extent, replace Z90.7, which was excluded from this report.