Isuroon CI Report – Final

What has been most instrumenta to your progress?

-Engaged Somali and Oromo women to discuss Female Genital Cutting with an expectation that identifying their concerns and barriers will highlight opportunities for healthcare to better address FGC and reduce racial disparities-

Isuroon invited 25 Somali and Oromo women to discuss their experiences of FGC health care in Minnesota. In depth conversations and focus groups further identified FGC as an intersection of deeply rooted cultural, health, mental health and racial issues. Those issues, coupled with low health literacy and language barriers, had a powerful impact leading to i.e. fear of healthcare providers, underdiagnosed maternal depression; labor and delivery issues including c-sections, lack of support related to sexual health because it’s a cultural taboo to talk about sexual intimacy; and feeling discriminated and disrespected.
Listening to women with FGC helped us summarize their experiences, beliefs and attitudes as well as better understand the root causes. This was the most important part of the project. By analyzing their experiences, we were able to discern the realistic ways to address the barriers to inclusive health care and to inform the health systems.

-Surveyed healthcare providers to determine their knowledge and experience treating East African women with FGC; their knowledge and use of available resources for East African women with FGC-related complications; their current level of training on FGC and their interest in additional training on the topic to determine how well healthcare providers and East African women’s perspectives aligned-
Isuroon created and distributed a survey which was completed by 254 Minnesota physicians, nurse practitioners, physician assistants, health services managers, nurse midwives, and public health consultants. They answered twenty-four questions about medical aspects of FGC, the types of FGC patients and symptoms they have treated, and their access to needed resources, information, and FGC professional development experiences. Survey findings revealed that few providers were nonwhite; few reported having above-average or high levels of knowledge about FGC procedures; insufficient understanding of FGC in the patients’ cultures; and most lacked knowledge of resources available in their community. A majority respondents said they would benefit from training on FGC.

-Identified solutions to close the FGC care gaps, increase cultural knowledge and improve experience for both patients and providers-

Using the feedback from both East African women and health providers, Isuroon identified several strategies to systematically address racial disparity and health equity related to FGC in the context of Western medicine in the largest Somali diaspora in the USA. Informed by this project findings and by the complexity of FGC issues, the key solution is a comprehensive and holistic women’s care center specializing in FGC. In collaboration with the health systems and employing the Somali staff, the women’s center will have two roles –provision of services to women affected by FGC and education of the medical staff. The women’s center will include community workers and doulas, system navigation, peer support, a call center, health literacy and telehealth options to make services accessible. Medical staff will benefit from Continuing Education to increase the cultural knowledge and reduce experience gap in treating FGC patients.
This component is important because the Women Care Center will be sustainable and can be replicated nationwide.

Key lessons learned

Lesson One/Complexity of FGC.
In conversations with East African women, we deepened our understanding of cultural, psychological and religious components of FGC and we better understood the impact on women’s lives which, unaddressed, create barriers to good lives. For example, some women experience trauma; taboo; stigma; silence around FGC; lack of language and communication; sexual health all prevented women to voice their needs. One size does not fit all – some women lead satisfying lives, while some suffer mentally and physically.

In the medical staff survey, we have learned first hand about their experiences, beliefs and dilemmas. In many responses, one can hear the anguish of medical staff, who while they will provide the best service, have a hard time dealing with FGC. Others show a lot of compassion and understanding as summarized with this quote: ‘As healthcare providers, we are not here to judge, but to serve and to care for women. We should seek to remove all barriers to care for women with FGC and not be afraid to speak openly with them about their pelvic health concerns and listen to what their needs are without assumptions or judgement.’

Lesson Two/Resilience and Self advocacy. We were surprised how firm the women were in wanting to improve their lives. Unlike their mothers, they want to live better lives, and if they need to have a surgery or therapy, they’ll do it. One participant said that when she comes to the doctor’s office, she feels ‘like coming foreign space -not familiar’ and the other said that they all need own safe place, where “they will not be the second-class citizens”. Once there is trust in place, women freely shared their opinions and solutions which many times, mirrored the comments by the medical staff.

Their words reveal their belief that that the current health system is not inclusive and that they do not belong or fit in it. It appears to be designed in large part by the men who have set existing standards many years ago and expect that people with different needs will adjust to their standards.

Reflections on the community innovation process

The most important element was “generating ideas.” One reason is that the community overall is more aware of racial and health inequity. The second is the number of women affected is high – 530,000 in the USA and at least 20,000 in Minnesota. Third reason for urgency is that East Africans have been in Minnesota since 1990s and the FGC care still is fragmented and unintegrated. Lastly, although we can hope that FGC will be reduced soon, global migration will lead to FGC being present for a couple of more generations.

On the other hand, during COVID-19 Isuroon went through a steep growth, confirmed our strength and commitment and we are ready to engage in solutions hands on. During COVID-19 we raised more than $4 million dollars in housing and food assistance which were passed on.

Regarding FGC, we have skills and know how to create a culturally appropriate Women Care Center specialized in FGC and provide training for FGC provider. We have put the foundations down through organizing doula/birth assistant training and pursuing credentials to join health insurance provider network.

Other key elements of Community Innovation

We can bring together people to engage in an intended change/innovation but how power is shared when bringing people together is a very important consideration and has to be thought through before starting any engagement process. While everyone may be indirectly affected by social problems, those who are directly experiencing the problem are often left out of processes of identifying what the problem really is. The diagram states “whenever possible include people directly affected by the problem.” It should not be “whenever possible,” but “always include people directly affected by the problem.” If people most affected are not included at the beginning of early discussions, with equal (not minimal) standing of everyone else, it seems a false narrative related to the problem may be created which might lead to a false “innovation.” From the very beginning, Isuroon has centered and listened to the women who, more often than not are generally overlooked, discriminated against and excluded.

Progress toward an innovation

Over the last two years, we made progress in identifying solutions for needs of East African women with FGC.
– Collected input. We facilitated a productive conversation about a need of East African women that was mostly not talked about, has gone unaddressed, and is misunderstood by many healthcare providers. We’ve listened and documented the women’s narratives and documented the providers’ narratives.
– Identified gaps including medical service gaps, cultural competency, communication, continuing education etc.
– Increased a collective understanding of the issue
– Generated ideas from both sides for the improvement and innovative solutions
– Drafting the plans for the Women’s Specialty Care Center, as a systematic and sustainable solution and add on to the medical systems.
We are definitely closer to a breakthrough – due to the above listed work, excellent response from the communities and increased capacity to move this project forward.

What it will take to reach an innovation?

NA

What’s next?

We plan to apply for funding to pilot Women Specialty Care Center. We have mapped out the key phases for the project including determining the location, services provided, health insurance requirements, accreditations and financials.
At the moment, we have completed an architectural survey and design of the current space we own and we have secured estimates for the various levels of the cost of converting the existing office space. Ms. Weli met with several county representatives in the areas of high East African population.
We do not expect that this process will go as fast or as smooth as we would like, so we are ready for a long term commitment to FGC care. On a positive note, a project like this is important to other areas in Minneapolis, in Columbus, Ohio and in Lewiston, Maine, which have large Somali populations and we plan on reaching to them.

If you could do it all over again…

First, we had to deal with COVID-19, which delayed our project start. Secondly, FGC is a sensitive subject to pivot to virtual conversations. We managed a few sessions because of our knowledge of East African culture but had to make a lot of assurances to support participants feeling comfortable. Our most successful sessions were in-person meetings where we practiced social distancing and wore masks. It would have been more helpful to work entirely via in-person discussions and develop stronger relationships among the participants.
We wish we had a chance to talk in depth with more health care providers, but between COVID-19 and the stress they were under, we appreciate their generous survey answers.

Going forward, we would allocate more time to develop surveys and conversation topics. FGC is a topic that many feel uncomfortable discussing so we spent considerable time developing survey questions in a way that does not blame or shame the healthcare responder for what they know and understand or don’t know and understand.

One last thought

We are grateful for the space this grant provided. It is interesting that COVID-19 actually supported the work on the grant. There were activities that we could not complete the way it was planned, but with people’s lives “on a pause”, we had more attention and participation that what would under “normal circumstances”, even from overworked medical staff.
The grant helped us better understand prejudices in both communities. We learned that the medical and general communities are uncomfortable with FGC and struggle to better understand it. FGC, in our opinion, also brings forward racial and gender issues in both communities. Both mainstream and East African communities will have to address their own prejudices and repression of women.