FGMToolkit.gwu.edu A living virtual toolkit for the care and prevention of FGM/C for women and health care providers August 28, 2019

Acknowledgements We are grateful for the FGM/C prevention funding and support from the Department of Health & Human Services, Office on Women’s Health. We are indebted to all the women, health care providers, and experts that participated in and supported the development and testing phases of the educational toolkits. Our toolkits would not have been possible without the dedicated research team and staff at GWU and our community partner, RAHMA.

Presentation Overview Project Overview Phase 1: Development Educational Toolkits Demonstration Phase 2: Alpha Testing Phase 3: Beta Testing

Project Overview

Project Aims Describe the experiences and resulting service needs of women who have undergone FGM/C. Describe the services rendered by direct service providers currently assisting women who have experienced FGM/C. Determine direct service providers' challenges in working with women who have experienced FGM/C. Describe the perceptions and experiences of direct service providers to meet the health and social service needs of FGM/C survivors and young females at risk for FGM/C. Develop and evaluate a toolkit for health care and social service providers (HCP) to effectively communicate with women who have experienced FGM/C and young females at risk for FGM/C.

Continuous quality improvement & content management Toolkit Progress 25 HCP interviews 26 FGM/C survivor interviews 12 key informant survey and interviews with HCPs and FGM/C survivors Phase 1: Development Phase 2: Alpha Testing Phase 3: Beta Testing 51 HCP surveys 156 Women surveys Website development Continuous quality improvement & content management

Phase 1: Toolkit Development

Toolkit development Up-to-date and evidence-based content Factsheet with general FGM/C information Screening forms for HCPs to use in practice D.C. specific resources for FGM/C survivors Diverse content types including videos Case studies and survivor stories

Two Educational Toolkits http://fgmtoolkit.gwu.edu

Phase 2: Alpha Testing

Alpha testing Participants: 12 key informants from DMV area – FGM/C survivors and health services providers Format: survey and follow-up interviews Topics: Overall toolkit content Participant knowledge and awareness Clarity of information Toolkit usability Submenu design and integration Cultural sensitivity

Alpha Testing - Results Results were mainly positive with a few suggestions for improvements (i.e. videos, DC resources, general formatting) On a scale from 1 (lowest) to 10 (highest), all submenu pages on the HCP and Women’s toolkits averaged 9+ in terms of: ease of understanding and clarity of information presented. how easy and pleasant each submenu is to use. whether the submenu provides the features the participant thought they would need or would use.

Alpha testing - Results "Because of the FGM I have to constantly take medicines because of infections [UTI]. I don't have a doctor here [DC]. I was looking for a doctor when I was asked to look at the toolkit. I now have a doctor and I have my medicine so I'm not in pain. I can't thank this toolkit enough for helping me to find what I needed.” - Survivor "Clear layout, excellent design/branding. Easy to navigate” – Health care provider "Impressed with the simplicity and 'user friendly’ [women’s] toolkit. The videos that allowed the user to hear from victims are very good. - Survivor

Beta Testing

Beta Testing - Overview Knowledge and Awareness Toolkit usability Toolkit content and navigation Self-efficacy Format: Online anonymous survey Participants: 207 women and HCPs

Beta Testing - Recruitment Communities were selected due to significant immigrant and refugee populations where FGM/C is commonly practiced. Many of the faith-based organizations also provide social and health services. Participants were also recruited from professional networks.

Beta Testing- Demographics Women (n=156) Health Care Provider (n=51) 103 U.S. born and 53 immigrants 83 were 18-30 years & 73 were 31-55+ years 58 participants had never heard about FGM/C before this survey 19 participants have family and/or friends who had experienced FGM/C 4 survivors of FGM/C 37 were 18-30 years & 14 were 31-55+ years 24 clinical HCPs & 27 social services providers 42 no prior FGM/C training

Next Steps Data analysis in progress for beta testing survey Continuous management and improvement to the toolkits Official Toolkit Launch Global Woman P.E.A.C.E Foundation’s 3rd Annual FGM/C Award Ceremony October 18, 2019

Thank you! Karen McDonnell, PhD kmcdonne@gwu.edu fgmtoolkit@gmail.com