Using EPIS in the Iterative Development of Outreach Materials and Support Group Curricula for Families of Children with DLD

Project Summary/Abstract Developmental Language Disorder (DLD) is a lifelong disability characterized by persistent difficulty with language learning and use that impairs daily functioning (Bishop et al., 2017). Families of a child with DLD experience increased stress and have difficulty accessing accurate, specific information about DLD (McGregor, 2020). Participation in support groups improves both knowledge and self-efficacy in families of children with more widely known neurodevelopmental disorders (e.g., dyslexia, Multhauf et al., 2016) by addressing families’ informational, instrumental (e.g., material) and emotional needs (Tétreault, et al., 2014), but to our knowledge no systematic approach to providing peer supports exist for families of people with DLD. A manualized support group curriculum provided by organizations that families most often turn to for developmental advice, such as schools or pediatric practices, is likely to have good reach for addressing the informational and emotional needs of families of children with DLD. Community buy-in and an implementation strategy that addresses barriers faced by providers are critical for long-term success. We address these concerns through EPIS (Exploration, Preparation, Implementation, and Sustainment; Moulin et al., 2019), an implementation process framework that provides tools to (i) innovate to enhance fit of existing evidence-based practices and (ii) build capacity in community organizations to ensure sustainment. To that end, we will engage the DLD community to design a manualized support group curriculum that uniquely meets their informational and emotional needs. Following adaptation of existing curricula for other groups based on focus groups with families with a child with DLD and SLPs, we will conduct a small-scale pilot for feedback on format, topics, and accessibility. We will also engage community practitioners to determine setting-specific barriers and facilitators and develop an implementation strategy in anticipation of future work. We then integrate these two strands in a community- based implementation trial to assess acceptability and early efficacy. Throughout, we employ mixed-methods approaches and rely on advisory boards to guide our practice and return information rapidly to the community. Thus, we aim to 1) Use EPIS to adapt and refine outreach materials and support group curricula to fit the unique needs of families of children with DLD from varied racial, ethnic, and educational backgrounds; 2) identify factors, characterized within the EPIS framework, that influence organizational and leadership capacity to support development of an implementation plan; and 3) assess the degree to which support group participation alters knowledge, self-efficacy, and parenting stress. Successful completion will result in development of a manualized curriculum for use with families of children with DLD and an implementation strategy. Together these will reduce parenting stress, improve self-efficacy and equip parents to advocate for their children thereby improving overall child outcomes. The data derived from this grant will serve as pilot data for an R01 that allows us to test these cascading outcomes through a large-scale Type 3 Implementation Trial.