Family Sense-Making After a Down Syndrome Diagnosis

Abstract

The script of parenting shifts when parents learn of their child’s Down syndrome diagnosis. To build a theory of the diagnostic experience and early family sense-making process, we interviewed 33 parents and nine grandparents living in the United States who learned prenatally or neonatally of their child’s diagnosis. The core category of rescuing hope for the future encompassed the social process of sense-making over time as parents managed their sorrow, shock, and grief and amassed meaningful messages that anchored them as they looked toward the future. Application of the theory to practice underscores the import of early professional support offered to parents at key points in the sense-making process: Early as they disclose the news of the diagnosis to family and friends, and later close friends and kin assimilate meaningful messages about what the diagnosis means as they recalibrate expectations for a hopeful future.