Artal, Jonathan M.

ABSTRACTParents of children with Down syndrome have historically reported poor experiences receiving a prenatal diagnosis. In a 2003 survey, mothers reported that their physicians pitied them, emphasized negative aspects of Down syndrome, and encouraged them to terminate the pregnancy. This study assesses whether parents' perceptions have since improved. Community‐based organizations that had distributed the original 2003 survey distributed a similar survey to parents who have had a child with Down syndrome since 2003. Compared to the 2003 survey, parents continued to report dissatisfaction with their prenatal medical care (N = 60). Though subgroups became likelier to view their testing experience positively, parents' experiences worsened on certain metrics. Most parents reported dissatisfaction when providers conveyed pity or attempted to influence their decision‐making about the pregnancy. Interventions to date have failed to improve parents' perceptions of their prenatal medical support, urging new strategies to improve parents' care.

Abstract A 2003 survey revealed the scope of mothers' dissatisfaction with their postnatal support following a diagnosis of Down syndrome (DS). Substantial proportions of mothers reported that providers conveyed diagnoses with pity, emphasized negative aspects of DS, and neglected to provide adequate materials explaining DS. This study follows up on the 2003 survey by assessing whether parents' experiences have improved. Four DS nonprofit organizations, which participated in the original study, distributed a mixed‐methods survey to families who have had children with DS between 2003 and 2022. Quantitative analysis assessed correlations among responses and differences between the 2003 and 2022 survey groups. Open‐ended responses were qualitatively analyzed. Compared to the 2003 findings, parents' perceptions of their postnatal care have not improved ( N = 89). Parents are increasingly likely to report that their providers pitied them, omitted positive aspects of DS, and provided insufficient materials describing DS. Substantial proportions of parents reported fear (77%) and anxiety (79%), only 24% described receiving adequate explanatory materials, and parents were 45% likelier to report that physicians discussed negative aspects of DS than positive aspects. Qualitatively, substantial numbers of parents recounted insensitive conduct by providers. These results suggest that despite interventions, parents' experiences of postnatal diagnoses of DS have not improved over time. Certain provider behaviors—such as describing positive aspects of DS and providing comprehensive explanatory materials—can reduce fear and anxiety, pointing to directions for reform.