Sample

We developed a purposive sampling strategy that included stratified enrollment of 6–8 experts from each of the identified clinical and/ or research specialties (reproductive health, primary care/ pediatrics, nursing, public health/ social science) for a preliminary aim to enroll a total of 24–32 participants, evenly split across high and low prevalence settings. We used the UNICEF definitions of high and low prevalence such that those countries where FGM/C has been practiced endemically by >10% of the population (approximately 30 countries) are classified as high prevalence [1]. The low prevalence countries according to the UNICEF definition predominantly include those where FGM/C is present among immigrants/ migrants from high prevalence countries.

Interview guide

We organized our interview guide according to our a priori domains of Knowledge, Attitudes, and Practices. The interview guide explored the participant’s opinion of: 1) the knowledge required to provide quality care for women and girls affected by FGM/C; 2) the attitudes that health workers may hold related to FGM/C and the care of FGM/C-affected women and girls; and 3) the clinical practices necessary for the provision of high-quality health care for women and girls affected by FGM/C.

Analysis

We used a directed content analysis approach to analyze the data via the coding and identification of themes using a systematic classification process [27]. Directed content analysis is a useful methodology when conducting research about a phenomenon that requires further examination and clarification. This approach can validate and/ or conceptually extend a theoretical framework–in this case the KAP framework in the context of FGM/C.

Following the interviews, audio recordings were immediately transferred from the recording device to a secure server hosted by Johns Hopkins University and erased from the recording device. Audio recordings were transcribed verbatim and error checked by a certified transcription and translation company. Written comments submitted in French (n = 2) were translated into English for analysis. We used NVivo 12 software to manage our analysis. Co-authors CM and NW led the qualitative analysis, and began by developing a preliminary codebook based on an a priori framework compromised of existing knowledge, attitudes, and practices categories published in a recent systematic review assessing the content of existing KAP measures [15]. Codes represented a topical area of interest or a specific example of that topic. CM and NW independently coded the same interview using the preliminary codebook and added additional codes as necessary for content that did not align with the a priori framework. CM and NW then compared coding and wrote a brief summary of each code. They then independently coded another three of the same interviews, then compared their coding engaging in discussion to reach at least 80% consensus in coding, refining the code summaries as needed. They then applied the finalized codebook to all interviews.

Ethics statement

The Institutional Review Boards of Johns Hopkins Medicine (IRB00159147) and the World Health Organization (ERC.0003031) granted ethical approval for the conduct of this study. We obtained oral consent from all participants.

Codes and categories in context

In this section, we provide additional context for the codes and categories represented in Figs 1–3 to clarify their relationship to health worker KAP. First, foundational knowledge of female anatomy and physiology is a prerequisite for providing care to people with FGM/C. This includes being able to recognize variations of external genitalia including clitoral size and function. For example, by recognizing which structures were affected by cutting, the health worker may take a more relevant history and identify possible treatments to control symptoms. This information was considered critical for all members of the health care team, not only physicians:

“… some categories of midwives… [do] not know definitely the physiology and anatomy of these genital parts so they need to concentrate in raising their knowledge about this…” (High Prevalence)

Requisite knowledge of anatomy and physiology factors that influence sexual function, such as arousal, desire, and relationship characteristics, were also deemed critical for providing care that would comprehensively address FGM/C’s sequalae.

When it came to FGM/C-specific content, participants agreed that understanding FGM/C types per the WHO definition and key terms such as defibulation (the surgical opening of the closed genital scar resulting from type III FGM/C) and FGM/C medicalization (when FGM/C is practiced by any category of health worker any time in a woman or girl’s life) were considered important [18]. All participants stressed the importance of understanding risk factors for FGM/C such as age, ethnicity and country of origin- as well as motivation for the practice. Although these motivations can vary by setting, participants articulated a clear need for health workers to recognize them. Several health workers pointed to key resources to do this: the WHO Guidelines for the Management of Health Complications From FGM and WHO’s Care of girls and women living with female genital mutilation: Clinical Handbook [18, 28]. Participants discussed how if health workers were not familiar with resources to inform appropriate care, they risk subjecting women to various negative experiences including stigma and bias during care (discussed later) and inappropriate interventions such as failing to address a Type 3 infibulation scar during labor and birth:

“Second stage of labor might be prolonged because of soft tissue distortion. Someone might not be aware of how to manage the scar… they should treat early in the second stage [with defibulation]… if you delay, second stage might be prolonged and it’s likely [the fetus is] disposed for perinatal asphyxia. (High Prevalence)

Participants stressed that health workers need opportunities to clarify their own attitudes toward the practice, women who have been affected by it, requests for FGM/C, defibulation, and reinfibulation (re-suturing a fully or partially opened type III scar, most commonly after childbirth) [29]. If this self-assessment is accomplished prior to interacting with affected patients, there is potential to more effectively and consistently empower patients as they navigate management options.

Given that there are legal implications for FGM/C, participants noted that health workers need to be aware of laws and reporting requirements in their own settings so they can act in accordance with local legal standards. At the same time, women living with FGM/C should not be treated as though they are the perpetrator; they should not be judged for something that was done when they were a child.

They should not be looked upon as criminals or those who had been subjected to harmful practice because they’re not responsible for this. When they were subjected to this practice, they were unable to give their consent. They were not aware about the procedure. They were never consulted about the procedure. (High Prevalence)

Participants, particularly from high prevalence settings, noted that many women who have undergone FGM/C do not identify as “victims” and do not want to be labelled as victims, but rather see themselves as strong and empowered women.

Interactions between knowledge, attitudes and practices

In this section we describe the ways in which participants discussed how knowledge, attitudes and practices interact. As noted above, knowledge can inform clinical practice by enabling health workers to assess for FGM/C, identify FGM/C type, assess for sequalae, provide treatment, and/or refer to specialist care. FGM/C-related knowledge can improve health workers’ ability to counsel clients about the social or financial pressures to perform FGM/C and respond to requests to perform FGM/C or reinfibulation. If the learning does not occur, practices may not be in line with current evidence. While participants across settings uniformly agreed that FGM/C should not be performed, a participant described how a health worker’s acceptance of FGM/C might change their practice:

A healthcare health worker coming from such communities… [probably supports] the traditional practice because of their socialization about FGM… if [they don’t] feel like FGM is a big thing or, an infringement of human rights, or don’t feel like it has a lot of health consequences, then they might easily overlook the kinds of problems that a woman has presented. (High Prevalence)

Conversely, the clinical practice of a health worker who has negative attitudes toward FGM/C that manifest in their affect may be negatively impacted. For example, patients who experience stigma from the health worker because of the FGM/C may have a poor patient experience, and delay or avoid future care.

“If [a health worker] looks down upon my community and then I would say, "No, you are not the right health worker to give me care."… If I perceive you as not caring then why would I subject myself to [you] care? You wouldn’t give me appropriate care, and I would perceive that your care is not well meant” (High Prevalence)

All participants endorsed a patient-centered approach, insisting that health workers earn the patient’s trust and not expect it based on their status as a health worker.

Participants discussed that attitudes toward FGM/C may motivate health workers to accept new knowledge about its harms, or resist learning about the harms of FGM/C. Participants across settings described how some health workers have negative attitudes towards communities where FGM/C is normative which may affect how care is delivered, i.e. by stigmatizing women and not treating them respectfully. In addition, subtle or overt expressions of bias may alienate patients. Attitudes or beliefs about women and communities that practice FGM/C may also lead health workers to make assumptions about patients. Participants across settings discussed how beliefs that women with FGM/C are less educated, backward or repressed (particularly related to sex and gender norms), or lack agency can result in patients feeling they are being looked down upon. Again, this can lead to avoidance of or discontinuing of care, either of which could result in poor outcomes. These assumptions may include preconceptions of how receptive a patient is to learning about FGM/C, possible treatments, FGM/C-related plans for any girl children and involvement from her partner or other family members. Some health workers may believe that a community’s commitment to FGM/C is immutable, and therefore not even worth fighting against, further leading the health worker to avoid engagement with FGM/C prevention activities. Participants stressed the importance of listening to each individual patient and providing patient-centered care based on her priorities, not preconceptions about her or her community.

The typical KAP sequence is perhaps best illustrated by participants from both medium/ high and low prevalence countries who argued that understanding, but not endorsing, the perceived benefits of FGM/C may cultivate health workers’ compassion and empathy, motivate learning about appropriate care, and enable them to more effectively care for and counsel patients without stigmatizing them and their families or communities. Arriving at an understanding of FGM/C’s perceived health benefits can occur in myriad ways–some participants described teaching this to colleagues and students. It can also occur organically. For example, a participant working in the low prevalence setting described how witnessing a nurse and patient from the same diasporic FGM/C practicing community led the participant to transform their attitudes toward FGM/C from one of pity for a perceived mutilation, toward an empathetic understanding of the meaning that the cutting may have for a woman. This participant underscored how empathy is not the same as support, and that even in the diasporic setting there may be health workers who support FGM/C as in a case where an operating room nurse from an FGM/C practicing community, upon seeing a Type 3 FGM/C during a cesarean birth, said:

“‘This is so beautiful!’… that’s when it really hit me that I need to honor women and really respect the value that they hold as it pertains to what’s being done to their bodies that is not the Western lines of mutilation.” (Low Prevalence)

Several similar vignettes from low prevalence settings noted that many health workers may themselves be immigrants from places where FGM/C is normative and hold strongly positive views of FGM/C.

Lack of knowledge about FGM/C may lead to behaviors that are alienating as well. Participants in the medium/ high prevalence settings discussed how prevalence may vary by region within a country, and emphasized that health workers must show compassion even when they have a strong affective response against the practice:

“… Even if [they] don’t understand [FGM/C] and are shocked and horrified, I think managing these kinds of emotions would be important because otherwise, it’s going to create more reluctance [for the patient] to say more. (High Prevalence)

Finally, participants discussed how a health workers’ perception that caring for FGM/C is complex may discourage them from discussing it with the patient at all. This avoidance may lead to worsening of symptoms due to neglect. Participants described that women living with FGM/C that obstructs the introitus may not be offered routine pap smears or experience delays in obtaining procedures such as endometrial biopsy because of difficulty accessing internal structures. If avoidance takes the form of unnecessary interventions, iatrogenic complications can occur. A number of participants from low prevalence areas highlighted the overuse of cesarean birth as a mechanism some health workers use to avoid addressing complex discussions about defibulation and/or reinfibulation.

What about patients that request reinfibulation? [Some] health workers have ethical or moral reasons that they don’t want to honor that. So, health workers end up offering a C-section because they say, "Oh, at least we can avoid dealing with that scar” (Low Prevalence)

Participants also emphasized that women living with FGM/C have the right to refuse recommended care without fear of retribution and should never be forced or coerced to undergo any genital exams or procedures. Participants discussed how health workers must have sufficient knowledge to adequately counsel patients about recommended care, and have the communication skills to fully engage in shared decision-making rather than coercion.

Ethics approval and consent to participate

The Johns Hopkins School of Medicine Institutional Review Board and WHO Ethical Review Committee granted ethical approval for this study. Oral informed consent was obtained from all participants. The interviewer explained the study aim and procedures to participants, confirmed their voluntary participation, and asked permission for audio recording before beginning all interviews. Identifying information was excluded from all transcribed texts to ensure anonymity of participants.