Learning From Success Stories: A Qualitative Investigation of Factors Influencing Families of Late Talkers to Pursue Communication Evaluations Before Age Three

PROJECT SUMMARY/ABSTRACT Communication delays are prevalent in young children. The most common communication delay is late lan- guage emergence (LLE) or “late talking.” Outcomes for late talking children are highly variable. Some late talk- ers “catch up” to their peers, while about 20% have lifelong language impairments that persist over time (i.e., developmental language disorder). Given the variability in outcomes, many late talkers do not receive commu- nication evaluations in a timely manner - a problem that is exacerbated for Spanish-speaking families with lim- ited English proficiency (LEP). There is little research on “access outliers”, that is, families who raise concerns about their children’s communication delays and then successfully pursue evaluations in their children’s first three years of life. Similarly, there is limited information about how professionals (e.g., pediatricians, early childhood and education providers) or other supporters (e.g., members of the family, community) helped fami- lies obtain these early communication evaluations, but this information is imperative for understanding how to effectively support more families. Qualitative approaches in implementation science may be leveraged to un- derstand the decisions of access outliers. The evidence-informed decision-making (EIDM) theory suggests that complex decisions are based on research evidence, values/preferences, and expert judgement. The decision- sampling framework is a qualitative method in which participants report on their decisions, and then answer a series of questions that are grounded in the EIDM theory. The goal of this study to understand the factors that influence families to pursue communication evaluations early (<36 months) for their late talking children, as well as to determine how professionals or other supporters helped families in obtaining those evaluations. Un- der the guidance of a community advisory board, we will co-design the EDIM theory to identify the factors that influenced caregivers to successfully pursue communication evaluations in their children’s first three years of life (Aim 1). After piloting the focus group protocol (n=6 caregivers), the decision-sampling framework based on EIDM theory will be used in a series of six focus groups - three with monolingual English-speaking caregivers and three with Spanish-speaking caregivers with LEP (7 parents per group, N=42 focus group participants). Our second aim (Aim 2) is to examine how professionals or other supporters helped families of late talking children obtain early communication evaluations. After piloting the interview questions (n=6 professionals and other supporters), key informant interviews (N=24) will be conducted with professionals (n=12 pediatricians, early childhood and education providers) and others (n=12 members of the family, community) who supported communication evaluations for late talking children. Results will be used to support more families in pursuing communication evaluations, while simultaneously building capacity in professionals or other supporters to ad- vocate for these families. Findings may contribute to NIH-wide crosscutting priorities to reduce health dispari- ties by narrowing the service gap between families with and without LEP.