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

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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.