Craniofacial microsomia: Accelerating Research and Education (CARE)

点击翻译按钮获取中文摘要

PROJECT SUMMARY / ABSTRACT Craniofacial microsomia (CFM) is complex congenital condition that affects approximately 1:3500 live births. Clinical features associated with CFM include underdevelopment of the facial structures, most commonly affecting the ear (e.g., microtia), jaw (e.g., mandibular hypoplasia), and nearly half of individuals with CFM have extra-cranial malformations, such as heart, kidney, or spine anomalies. Latinx individuals are twice as likely to have CFM than their non-Latinx white peers. Little is known about the economic, social, health, and clinical experiences of individuals affected by CFM and their families. Even less is known about these impacts on affected Latinx families. Compounding this is that Latinx participation in biomedical research is disproportionately low. Though smartphones, QR codes and texting are widely used in the US Latinx community, there is a digital divide in the use of technology to recruit Latinx individuals into biomedical research. Web-based resources do not address the informational needs, culture and/or language of the Latinx community. New strategies that engage and include Latinx individuals in web-based research are essential to produce findings that are generalizable. Our long-term goal is to leverage our CFM disease registry to answer a wide range of patient-oriented questions that improve the health and well-being of individuals affected by CFM. In this project, we aim to develop and evaluate a chatbot as a novel recruitment tool to facilitate Latinx participation in the CFM registry. We will develop a human-centered design (HCD) chatbot that provides culturally and linguistically tailored, on-demand information to aid enrollment. The chatbot will include 3 dialogues: non-Latinx English, Latinx English, and Latinx Spanish. We will complete the following aims: Aim 1 (Discover): Characterize barriers and facilitators to recruitment into our CFM registry among Latinx (English and Spanish-dominant) and non-Latinx individuals, Aim 2 (Design): Employ an iterative process to test and modify a chatbot employing SMS/texting-based strategies to enhance recruitment into our CFM registry for our 3 dialogues, and Aim 3 (Evaluate): Deploy and evaluate the recruitment chatbot over a 6-month period. Our iterative, ongoing, and deep involvement with end-users will include 40 interviews with non-Latinx, Latinx English, and Latinx Spanish individuals for each aim (120 interviews total). This will ensure our platform, flow and timing of information, and other structural components of our HCD chatbot will support recruitment for the CFM registry. Using socially and culturally appropriate communications, our HCD chatbot will be engaging, usable and interactive. This work will add new knowledge about the extent to which a HCD chatbot can increase engagement and enrollment into the CFM registry, and its potential to enhance recruitment of Latinx and non-Latinx individuals into biomedical research more broadly.