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.

项目总结 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 在以下背景下进行研究并记录照顾者的旅程及其对其心理健康的影响 R01支持的裂三联症的全基因组测序(WGS)鉴定为“二次发现” DE028300。我们计划在拉各斯的Cleft诊所为护理人员进行有针对性的小组讨论，并 库马西。这将使我们理解为什么95%的这些家庭希望获得包括SF(AIM)在内的基因组结果 1)。我们还计划使用PhotoVoice方法实时捕捉照顾者的旅程和户外 诊所。这将使我们了解弹性的水平，应对机制，快乐的时刻和 在诊所就诊期间通常不会向护理提供者传达的挑战(目标2)。这项研究将 由爱荷华大学的布塔利博士与爱荷华大学的阿迪格博博士合作领导。 夸梅·恩库鲁马科技大学的Gowans，拉各斯大学的Adeyemo博士 以及Insight Health Consulting的Mba-Oduwusi博士。