Enhancing Participant Engagement through the Journey of Orofacial Clefts Caregivers

项目摘要 这些拟议的生物伦理学研究计划增加参与者对遗传学和基因组学的参与 研究和记录照顾者的旅程及其对心理健康的影响， 通过R 01支持的裂三联体全基因组测序（WGS）确定的“次要发现” DE028300。我们计划在拉各斯的唇腭裂诊所为护理人员进行重点小组讨论， 库马西。这将使我们能够理解为什么95%的这些家庭想要包括SF（Aim）在内的基因组结果。 1）。我们还计划使用photovoice的方法来捕捉旅程的照顾者真实的时间和以外的 诊所这将使我们能够了解韧性的水平，应对机制，快乐的时刻， 这些挑战通常不会在诊所访问期间传达给护理提供者（目标2）。本研究将 由爱荷华州大学的Butali博士领导，与爱荷华州大学的Adeagbo博士合作， Kwame Nkurumah科技大学的Gowans，拉各斯大学的Adeyemo博士 以及Insight Health Consulting的Mba-Oduwusi博士。

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.