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

优化患有 IDD 的不同母亲及其婴儿在围产期的健康和福祉：用于数据驱动支持的虚拟倡导工具

• 批准号: 10760051
• 负责人: Kathleen M Baggett
• 金额: $ 29.57万
• 依托单位: OREGON RES BEHAVIORAL INTERVENTION STRAT
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-01 至 2024-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10760051
• 关键词: Optimizing; Health; Well; Being; Diverse

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.

抽象的 智力和发育障碍的妇女（IDD）面临许多结构和系统因素 在围产期，可能会损害孕产妇的健康，情感健康和育儿能力，这 可能威胁婴儿的健康和福祉。这些母亲经常被排除在干预发展和 针对母性情感健康和育儿的疗效研究以及当关注育儿时， 它往往是负面的。这种负面的重点是由有限能力的污名化假设驱动的 这些妇女为孩子们父母。而且，鉴于由这个国家的结构和系统偏见 历史，有染色的有色母亲受到污名化和隐性偏见的影响，进一步减少 他们的声音有效地倡导自己和婴儿的健康。这些污名化的信念是 不仅限于严重残疾的女性，但对于温和和中等智力的女性而言是普遍的 和包括唐氏综合症的女性在内的认知发展障碍。4应对污名化 假设和种族与残疾的交集，当前的研究试图开发和试点测试 专业/专业专业倡导者虚拟工具的基础，以支持健康和福祉 有智力（认知）残疾及其婴儿的多元化母亲，包括有唐的母亲 综合征。该工具供围产期的母亲与母亲一起使用，从产前开始。 产后。开发过程（AIM 1），旨在确保虚拟工具表示 多元化的母亲和拥护者，有15位拥护者和15位母亲的告知，每个群体同样代表 黑色，白色和拉丁文化/身份。通过迭代焦点小组和内容分析，开发 工具将允许倡导者a）有效地收集一系列关键的健康和福祉指标 文化力量，母性情感健康，母性健康，孕产妇积极育儿的领域； b）对每个母亲的担忧提出概述； c）根据 每个母亲的健康和福祉。该应用将包含4个原型健康和福祉会议 母亲链接到关键指示域。倡导者将根据母亲的支持为母亲提供会议 计划。 AIM 2试点研究使用15种不同的倡导者使用结构化的，模拟的母亲的方法，每个人都会 用3个模拟母亲实施虚拟工具，代表不同水平的健康和福祉和围产期 阶段（产前，第4个孕期，5个以上）。主张可行性，可接受性和实施忠诚将 被评估；获得的信息将告知第2阶段。