Worry now or wait: A mixed-methods study of caregivers' and pediatricians’ decision-making for late talking

PROJECT SUMMARY/ABSTRACT The long-term objective of this line of research is alleviate information and knowledge-to-practice gaps related to late talking for caregivers and pediatricians. This work supports NIDCD’s mission of reducing the burden of communication disorders, and specifically the Tackling Acquisition of Language in Kids (TALK) initiative goals to better understand information and practice needs related to late talking for caregivers and pediatricians. Late talking occurs in approximately 10-20% of all toddlers. Upwards of half of late talkers later have largely typical language functioning. Predicting which late talkers go on to develop neurodevelopmental disorders is imprecise despite decades of research. Therefore, making screening, evaluation, and intervention decisions for late talkers is difficult. For many late talkers, their caregivers’ first decision point comes at well-child visits with their pediatricians. The prognostic uncertainty of late talkers introduces a major dilemma for these invested parties: should we worry now or should we wait? How caregivers and service providers, specifically pediatricians, arrive at an answer to this question is largely unknown. We address three current barriers: (a) we do not know what caregivers of late talkers need to know to effectively participate in the decision-making process, (b) we do not know what pediatricians of late talkers need to know to effectively lead the decision-making process, and (c) we do not know how social determinants of health uniquely affect knowledge and decision- making gaps about late talking. Our inquiry is rooted in the Bioecological Model of Human Development to identify information barriers and facilitators to decision making by caregivers and pediatricians. Across three aims we use a mixed methods approach to ascertain (a) current methods that caregivers and pediatricians use to obtain information to support decision making about late talking, including barriers and facilitators to obtaining diagnosis and services, (b) information needs that caregivers and pediatricians believe are vital to support their decision making about late talking, and (c) whether these information needs differ across families from different backgrounds. We use an Exploratory Sequential Design to address the aims. First, in Aims 1 and 2 we use qualitative methods to ascertain information needs and practice gaps across two invested parties: caregivers of late talkers and the pediatricians who serve them. Then, we integrate the results from Aims 1 and 2 with the prior literature to develop quantitative measures to use in a nationwide sample of 350 caregivers of late talkers to identify social determinants of health that impact information and practice needs about late talking. This study will provide a better understanding about how caregivers and pediatricians access and use information to make decisions about late talking, as well as how social determinants of health impact information and practice needs of families. Including diverse perspectives across caregivers and pediatricians will lead to increased understanding of the impact of social determinants of health on decision making related to late talking in the short-term and contribute to the development of culturally-relevant counselling materials in the long-term.