Enhancing Participant Engagement through the Journey of Orofacial Clefts Caregivers

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PROJECT SUMMARY These proposed bioethics research is planned to increase participant participation in genetics and genomics research and to document the journey of caregivers and impact on their mental health identify in the context of “secondary findings” identified through whole genome sequencing (WGS) of cleft triads supported by R01 DE028300. We plan to conduct focused group discussions for caregivers at the cleft clinic in Lagos and Kumasi. This will allow us to understand why 95% of these families wanted genomic results including SF (Aim 1). We also plan to use photovoice method to catch the journey of the caregivers real time and outside of the clinic. This will allow us to understand the level of resilience, coping mechanisms, happy moments and challenges that are not usually communicated to the care providers during clinic visits (Aim 2). This study will be led by Dr. Butali at the University of Iowa in collaboration with Dr. Adeagbo at the University of Iowa, Dr. Gowans at Kwame Nkurumah University of Science and Technology, Dr. Adeyemo at the University of Lagos and Dr. Mba-Oduwusi at Insight Health Consulting.