Caregiver Perspectives on Telehealth Assessment and Other Supports for Infants with Early Developmental Concerns.

Abstract

This study examined the experiences of families of children with developmental concerns in the first year of life, before formal diagnostic evaluations are typically conducted. We aimed to understand the impact of participation in a telehealth-based research evaluation in infancy, identify existing community-based supports perceived favorably by caregivers, and identify suggestions for future directions. Participants were recruited from an prior study evaluating a telehealth assessment for infants with early social communication delays. Here, we interviewed caregivers (n = 19) who participated in follow-up study in toddlerhood. Transcripts from the semi-structured interviews were transcribed and analyzed using both inductive thematic and content coding approaches. Analysis of these interviews resulted in four core themes describing caregiving during this time: (1) Caregivers felt lonely, overwhelmed, and dismissed by providers, leading to feelings of uncertainty about their child's development and future; (2) Telehealth assessments were appreciated because external supports are minimal, complex to navigate, and do not address all areas of need; (3) Desire for additional community and connection; and (4) Information is power. Caregivers reported participating in the telehealth assessments helped them to feel reassured, validated and supported. Outside the study, they sought a wide variety of services and resources. The most frequent requests were for parent coaching sessions and family navigation. Caregivers experienced uncertainty and disempowerment during the pre-diagnostic period and sought education and guidance during this time. Findings reflect the importance of centering family priorities when developing early intervention services for infants with elevated likelihood of autism.