Female Genital Cutting in the Arizona Somali Refugee Community

Prevalence of Female Genital Cutting (FGC) in Arizona is uncertain; no available state or
national surveys with either prevalence or risk estimates exist, necessitating estimates
indirectly derived. Acknowledging a diversity of African-born communities where FGC is
prevalent within Arizona, for this proposal our team chose to focus specifically on the
Somali and Somali Bantu communities in Phoenix and Tucson for three reasons: 1) size of the
community and FGC-related health care concerns, 2) Type III FGC (most severe form) is most
common among Somali women, and 3) a long-standing record of robust community partnerships
that exist among our partnering agencies and the Somali community. This Project Community
will establish comprehensive strategies to ensure diverse input from partners in developing
collaborative operating principles. The community partners will be: 1) involved in the
planning and design of the project; 2) given the responsibility to identify Community
Mobilizers; and, 3) evaluate and align the educational content of outreach materials to match
cultural standards.

RWHC Clinical Care, Prior Research, and History of CBPR Engagement/Partnership RWHC: Since
2008, RWHC at Maricopa Integrated Health System (MIHS) has addressed disparities in knowledge
and expertise in care of women with FGC, establishing a patient-centered medical home for
refugee women. The first of its kind in Arizona, it is nationally recognized as a best
practice model for refugee women's health care, addressing reproductive health disparities
among newly-resettled refugee women. The multilingual, bicultural staff, refugee women who
serve as Cultural Health Navigators (CHNs), facilitate an integrated team approach to
comprehensive health care delivery and health care system navigation. RWHC has robust
partnerships with local communities affected by FGC, engaging in Community-Based
Participatory Research (CBPR) to enhance community collaboration in culturally relevant
intervention/program design. Despite these efforts, there remains a critical need for
increased provider cultural competency in caring for FGC-affected populations and in
de-monopolizing care so that providers become skilled in caring for FGC-affected women.

Prior Research: Training among Healthcare Providers: In 2014, RWHC surveyed 508 US healthcare
providers to assess awareness of FGC, prior training exposure, and current approaches to care
for women affected by FGC. Results showed widespread knowledge gaps among providers, with 81%
expressing a desire for further education/training on FGC. Results also showed that exposure
to FGC training and direct clinical care encounters with FGC-affected populations predicted
increased competency in the care of these women.

Prior Research: Gaps between Providers and Somali Women: Our team conducted a mixed-methods
study in Maricopa County, Arizona (July 2011-May 2012) exploring knowledge, perceptions and
experiences in the context of FGC among Somali women (n=73) and obstetrics/gynecology
healthcare providers (n=74). Findings suggested a substantial lack of agreement between
Somali women and health care providers on prenatal care, labor, and delivery in the context
of FGC. Although providers often failed to recognize FGC-related health concerns and
management around childbirth and agreed they lacked formal training on FGC- related care,
they linked all types of FGC to adverse birth outcomes. Stigmatization, alienation, distrust,
lack of cultural knowledge and clinical skills, and fear of surgical interventions led Somali
women to delay prenatal care and arrangements for labor and delivery while they categorically
rejected the imposed construct of "FGC-victimization." History of Community
Engagement/Partnership: An established infrastructure of community partnership, engagement,
and shared community leadership exists through the Refugee Women's Health Community Advisory
Coalition (RWHCAC). The RWHCAC is an interdisciplinary team of more than 60 stakeholders from
various community organizations representing local ethnic organizations, refugee resettlement
and volunteer agencies, mental health and social services agencies, and academic partners.
Through RWHCAC, we have partnered with the Somali community on numerous collaborative
initiatives to build community capacity on Somali reproductive health issues of importance
Goal and Anticipated Outcome To address health disparities for Somali women, the goal of this
initiative will be to elucidate gaps in care and enhance the provision of FGC-related health
care and social services for women in Arizona who have experienced FGC. Outcome 1: Identify
specific FGC-related health care needs and available health and social services for
FGC-affected women in Arizona. Outcome 2: Identify gaps, barriers, and/or assets in
FGC-related health care and social services for women in Arizona. The Somali community has
expressed their desire for greater engagement of all community stakeholders in providing
community-wide education enhancing community awareness on available health
services/resources, interpreting FGC-related legislation, and educating health care
providers. Outcome 3: Create and implement FGC education efforts to improve culturally
competent care in healthcare and social service settings for FGC-affected women. Outcome 4:
Implement comprehensive community outreach and education about FGC- related health issues,
prevention, and services available.

Year 1 Strategy: Outcomes 1 and 2 will be addressed by identifying specific FGC-related
health care needs and available health and social services for FGC-affected women including
an identification of the gaps, barriers, and/or assets in FGC-related care. Instrument: The
CNHA will assess baseline and interval changes in: knowledge, attitudes, and behavioriii on
FGC-health related issues, as well as gaps, barriers and/or assets in the receipt of health
services (see Work Plan Appendix). This same survey will re-administered in-person or via
telephone by Community Mobilizers in Year 3 to assess changes in knowledge, attitudes and
behavior.

Recruitment: A Respondent-Driven Sampling (RDS) strategy will be used to recruit community
participants in this project. RDS is an effective method for recruiting "hidden" populations,
such as refugee populations and when participant behaviors are stigmatized. The RDS is an
advanced adaptation of the traditional snowball sampling method; a small number of selected
initial recruiters (socially connected community mobilizers and organizations) generate a
list of potential recruits from their social networks, connections and community memberships.
They are given distinctive identifying coded coupons and incentives to create the first wave
of recruits. The first wave of recruits will also be incentivized to recruit a second wave,
and so on; the wave after wave recruitment cycle will continue until equilibrium is attained
and sample size is achieved. We performed a precision analysis to estimate a sample size
based on the prevalence rate of FGC in the population, the margin of error desired, the
confidence interval, the total population size, the expected attrition, and the design effect
from using RDS. We expect 40 percent attrition, with a population size of about 3,300 women,
and a RDS design effect of 2, thus a need to retain 2,040 women in the sample. Data
Management: Each questionnaire will be given a unique identifier code to match coded coupons
of the community mobilizer to identify the specific wave it originated from. Data entry will
occur in the field, completed by surveyors, eliminating the need for further entry processes
so that preliminary analyses will proceed concurrently. CHNA results will inform the
educational training among health and social service providers as well as community
educational outreach for providers and community members.

Barriers and Assets: Potential barriers include low literacy, trust, confidentiality,
ethnic/clan affiliation, and/or discussion of FGC as a sensitive/taboo subject matter. To
address these concerns, the survey will be verbally administered in Somali and/or Maay Maay
by female Community Mobilizers sharing the same ethnic/cultural/linguistic background as the
participant. Community Mobilizers, trained on human subjects protections regarding consent
and confidentiality, will conduct interviews in settings deemed appropriate and safe by the
participant, and in respect for Muslim prayer times.

Year 2 - 3 Strategy: Utilizing CHNA results we will refine and implement educational
outreachefforts across the state to improve provider culturally competent care of
FGC-affected women and to promote community education about the prevention of FGC. Health
care and Provider Education: A detailed description of partnerships for provider education
and training in Year 2 are included in the Work Plan Appendix. Sustainability: Throughout
Years 2 and 3, participants in the workshops will be invited to join FGC ECHO, through
monthly FGC teleECHO™ video conferencing clinics. This educational outreach will build
culturally competent care expertise across a wider net of health and social service providers
to improve health outcomes. Providers will be offered links to online educational resources
and webinars, and ADHS BWCH/RHP will offer continuous support. Bridging Refugee Youth and
Children's Services (BRYCS), a current Office of Refugee Resettlement (ORR)-funded technical
assistance (TA) provider, will enhance efforts through its website, national Clearinghouse
and newsletters across a diverse platform of providers. Data Management: Pre-post surveys
will be conducted at baseline, Year 2, and 15 months after the workshop completion in Year 3.
Analyses will assess changes in provider knowledge, attitudes towards FGC, and clinical care
and management. Barriers and Assets: To address the potential for low provider attendance at
the educational workshops, we will offer Continuing Medical Education/Continuing Education
Unit (CME/CEU) credits to promote provider professional development, and specifically, to
target providers and health care institutions serving FGC-affected communities. Assets that
will ensure strong provider attendance and sustainable access to professional development are
ADHS BWCH/RHP's resources to host live webinars for those who are unable to attend the
workshops in-person.

BRYCS will facilitate statewide and national dissemination of provider educational materials
through its online network of 7,000+ members and strong social media following. Benefits to
other communities: Arizona will be one of 10 states participating in the provider workshops
led by Dr. Nawal Nour. Data gathered from pre-post surveys will inform national efforts to
address gaps in provider and community knowledge. Furthermore, the FGC ECHO initiative
promises far-reaching implications for improving provider competency and skill in regions
where there are no FGC specialists. Specific products/outcomes proposed for development or
modification beyond the OWH final report: Providers will receive a workshop program workbook
on caring for FGC-affected populations, links to online resources, webinars and ongoing
access to FGC, ECHO and BRYCS networks of inter-professional providers. Community Outreach
and Education: Prior collaborations have demonstrated the critical role of men in women's
healthcare decision-making. Moreover, cultural etiquette requires male forums to be held
separately from female forums. Community forums will be convened and led by trained community
leaders and will break into small groups organized by generational status comprising youth,
elders, and the middle-aged to facilitate further discussions to illuminate specific
community needs and educational priorities for providers (see Work Plan for details). During
the FGC Listening Sessions held in 2014, the Somali community voiced a need to hear from
religious leaders who could interpret the significance of FGC through the lens of their
faith. In response to this request, leaders from the Islamic community will be invited to
address the forums on FGC from a religious perspective. In particular, the forums will invite
younger Somali women to address health care needs of women engaging in FGC and attitudes
about prevention. Also, during the women's forums, participants will view the ORR Somali
health educational video on FGC and receive a bilingual educational brochure on FGC to
facilitate the empowerment of women to discuss their FGC-related care and management with
their providers.

In Year 3, a follow-up CHNA will be re-administered. Community Mobilizers will conduct the
surveys either in-person or via telephone. Role of Sub-recipients: One sub-recipient will
provide support for additional time for the Project Lead and a Project Manager (see
subcontract scope of work for details). Data Management: The Work Plan Appendix includes a
detailed description of the tasks, performance measures and expected products from the
community forums. Sustainability: This project will build capacity for Community Mobilizers,
ECBOs and Community Representatives to be closely engaged with ongoing efforts of the VOLAGs,
healthcare institutions, and RWHC/SIRC to promote refugee community health.

Strength and Expertise of the Applicant and Partnerships of Project Community: Project Lead,
Dr. Crista Johnson-Agbakwu, MD, MSc, Founding Director of RWHC, brings nearly two decades of
experience with FGC-affected communities. Her academic research home, the Southwest
Interdisciplinary Research Center (SIRC) at Arizona State University, is anNIH/NIMHD
Exploratory Center of Excellence in CBPR-driven health disparities research to address social
and cultural processes as factors in the reduction and elimination of health disparities
(P20MD002316). SIRC provides research infrastructure support including methods expertise,
data management, statistical, grant development, and evaluation. As part of SIRC, the Project
Lead guided a refugee health literacy demonstration project in partnership with RWHCAC. Thus,
the RWHC/SIRC partnership is well-positioned to co-lead this project. The Project Community,
comprised of members of the RWHCAC including local voluntary resettlement agencies (VOLAGs),
Ethnic Community-Based Organizations (ECBOs), individual Somali/Somali Bantu Community
Representatives, and local health care institutions in Phoenix and Tucson, has been engaged
in planning this proposal and will be immersed in all phases of implementation, reporting,
statewide dissemination and sustainability.

Inclusion Criteria:

- live and receive healthcare treatment and social services in Arizona

- meet the age criteria

Exclusion Criteria:

- males

- non-Somali Refugee women