Prenatal Experiences and Desires With Early Intervention for Families of Children With Down Syndrome

Abstract

Part C early intervention (EI) starts no earlier than birth, even with a prenatal diagnosis resulting in automatic eligibility. Despite other early home visiting programs beginning prenatally and the increasing likelihood of uncovering certain diagnoses prenatally, pregnant families cannot access EI. This study sought to understand families’ perspectives on their desire for prenatal EI and how EI could support them. Seventeen primarily White non-Hispanic mothers with a prenatal diagnosis of Down syndrome shared their prenatal experiences through retrospective, qualitative interviews. Three themes emerged: (1) prenatal period as a time to connect to EI, (2) different families, different prenatal desires, and (3) postnatal EI experiences, prenatal EI hopes. Families saw benefits to starting prenatally to enroll in and understand EI, and prepare for their baby’s arrival through individualized outcomes. Families appreciated their postnatal EI and envisioned similar supports prenatally. Participants’ shared experiences are discussed in relation to pre- and postnatal EI.