Optimizing Health and Well-Being of Diverse Mothers with IDD and Their Infants During the Perinatal Period: A Virtual Advocate Tool for Data-Driven Supports

摘要 患有智力和发育障碍的妇女面临过多的结构性和系统性因素， 在围产期，这可能会损害孕产妇健康，情感健康和养育能力， 会威胁到婴儿的健康和幸福。这些母亲往往被排除在干预发展之外， 针对母亲情感健康和养育子女的功效研究，当注意力集中在养育子女上时， 它往往是消极的焦点。这种消极的关注是由能力有限的污名化假设驱动的 让这些女人来抚养孩子此外，考虑到这个国家的结构性和系统性偏见， 历史上，患有IDD的有色人种母亲受到污名化和内隐偏见的严重影响， 他们的声音的功效，积极倡导他们和他们的婴儿的健康。这些污名化的信念是 不限于严重残疾的妇女，但在轻度和中度智力残疾的妇女中很普遍。 包括患有唐氏综合症的妇女。 假设和种族和残疾的交叉，目前的研究旨在制定和试点测试， 专业/准专业倡导者虚拟工具基金会 患有智力（认知）残疾的不同母亲及其婴儿，包括患有唐氏症的母亲 综合征该工具供母亲在围产期使用，从产前到第一年 产后开发过程（目标1），旨在确保虚拟工具代表的声音， 不同的母亲和倡导者，由15名倡导者和15名母亲提供信息，每一组都具有同等代表性 黑人，白色和拉丁文化/身份。通过反复的焦点小组和内容分析， 工具将使倡导者能够a）有效地收集范围广泛的健康和福祉的关键指标， 文化力量、产妇情感幸福、产妇健康、产妇积极育儿等领域; B）为每位母亲制作一份关注问题的简要概况;以及c）根据以下内容制定一份建议的支持计划： 每个母亲的健康状况该应用程序将包含4个原型健康和福祉会议， 母亲与关键指标领域挂钩。倡导者将根据她的支持为母亲提供会议 计划Aim 2试点研究采用了一种结构化的模拟母亲方法，有15名不同的倡导者，他们将分别 使用虚拟工具，3名模拟母亲代表不同的健康和福祉水平， 阶段（产前，第4个三个月，5+三个月）。倡导可行性、可接受性和实施忠实性， 评估;获得的信息将用于第2阶段。

Abstract Women with intellectual and developmental disabilities (IDD) face a plethora of structural and systemic factors in the perinatal period that can compromise maternal health, emotional well-being, and parenting capacity, which can threaten infant health and well-being. These mothers are often excluded from intervention development and efficacy studies that target maternal emotional well-being and parenting and when attention is given to parenting, it tends to be negatively focused. This negative focus is driven by a stigmatizing assumption of limited capabilities of these women to parent their children. Moreover, given structural and systemic biases driven by this nation's history, mothers of color with IDD are disparately impacted by stigmatization and implicit bias, further lessening the efficacy of their voice to positively advocate for their and their infant's health. These stigmatizing beliefs are not limited to women with severe disabilities but are pervasive for women with mild and moderate intellectual and cognitive developmental disabilities including women with Down Syndrome.4 To counter stigmatizing assumptions and the intersection of race and disability, the current study seeks to develop and pilot test the foundation for a professional/paraprofessional advocate virtual tool to support the health and well-being of diverse mothers with intellectual(cognitive) disabilities and their infants, including mothers with Down's Syndrome. The tool is for use with mothers across the perinatal period, beginning prenatally through first year postpartum. The development process (Aim 1), designed to ensure the virtual tool represents the voices of diverse mothers and advocates, is informed by 15 advocates and 15 mothers, each group equally representative of Black, White and Latina culture/identity. Through iterative focus groups and content analysis, the developed tool will allow advocates to a) efficiently collect a broad spectrum of key indicators of health and wellbeing within the domains of Cultural Strength, Maternal Emotional Wellbeing, Maternal Health, Maternal Positive Parenting; b) produce a summary profile of concerns for each mother; and c) produce a suggested support plan based on each mother's health and wellbeing profile. The app will contain 4 prototype health and wellbeing sessions for mother linked to key indicator domains. Advocates will provide sessions to mothers according to her support plan. The Aim 2 pilot study uses a structured, mock-mother approach with 15 diverse advocates, who will each implement the virtual tool with 3 mock mothers representing varying levels of health and wellbeing and perinatal phase (prenatal, 4th trimester, 5+ trimester). Advocate feasibility, acceptability, and implementation fidelity will be assessed; information gained will inform Phase 2.