Parenting in the face of childhood life-threatening conditions: The ordinary in the context of the extraordinary

Abstract

OBJECTIVE: Uncovering what it means to be a parent during the extraordinary time of a child’s life-threatening condition (LTC) is important for understanding family goals, decision making, and the work of parenting within this context. METHOD: Qualitative descriptive methods were employed to describe the everyday experience of parenting both children who have an LTC and their healthy siblings. RESULTS: Some 31 parents of 28 children with an LTC who have healthy siblings participated in our study. Four themes emerged from the data that describe a parental desire to maintain emotional connection with all of their children, how parents use cues from their children to know them better and develop parenting strategies, how parents change as a result of caring for a child with an LTC, and how they strive to decrease suffering for all of their children. SIGNIFICANCE OF RESULTS: The findings of our study have implications for clinical practice, family-focused research, and health policy pertaining to families of children with life-threatening conditions.