Enhancing Participant Engagement through the Journey of Orofacial Clefts Caregivers

通过口面部裂护理人员的旅程增强参与者的参与度

• 批准号: 10786549
• 负责人: Azeez Butali
• 金额: $ 29.6万
• 依托单位: UNIVERSITY OF IOWA
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-07-01 至 2024-01-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10786549
• 关键词: Address; Affect; Bilateral; Bioethics; Birth; Caregivers; Caring; Child; Clinic; Clinic Visits; Clinical; Collaborations; Communication; Communities; Community Health; Congenital Abnormality; Consent; Data; Disease Management; Early Intervention; Environmental Risk Factor; Epidemiology; Esthetics; Ethnic Origin; Family; Focus Groups; Gatekeeping; General Population; Genetic; Genetic Risk; Genomics; Goals; Happiness; Health; Health Personnel; Individual; Iowa; Knowledge; Lip structure; Live Birth; Mental Health; Mental Health Services; Methods; Nigeria; Oral Surgical Procedures; Outcome; Parents; Participant; Personal Satisfaction; Phenotype; Population; Prayers; Predisposing Factor; Process; Psychiatry; Public Health; Recording of previous events; Recurrence; Religion; Research; Research Personnel; Risk; Role; Science; Sociology; Technology; Testing; Time; Traditional Birth Attendants; Universities; Work; care providers; cleft lip and palate; coping mechanism; craniofacial; gene environment interaction; genetic risk factor; genome sequencing; improved; insight; interdisciplinary approach; member; notch protein; offspring; oral surgery specialty; orofacial cleft; patient engagement; psychosocial; resilience; whole genome

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.

项目概要 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 研究并记录护理人员的旅程及其对他们心理健康的影响 通过 R01 支持的裂三联体全基因组测序 (WGS) 确定的“次要发现” DE028300。我们计划为拉各斯的唇腭裂诊所的护理人员进行集中小组讨论。 库马西。这将使我们了解为什么 95% 的家庭想要包括 SF 在内的基因组结果（目标） 1）我们还计划使用语音方式实时捕捉护理人员的行程。 这将使我们了解复原力水平、应对机制、快乐时刻和 在诊所就诊期间通常不会向护理人员传达的挑战（目标 2）。 由爱荷华大学的 Butali 博士领导，与爱荷华大学的 Adeagbo 博士合作， 夸梅·恩库鲁玛科技大学的高恩斯 (Gowans)、拉各斯大学的阿德耶莫 (Adeyemo) 博士 和 Insight Health Consulting 的 Mba-Oduwusi 博士。