Subject
Distress; Framework; Child; Perspectives; Cancer; Health Policy & Services; Serious Illness; Outcomes; Families; Bereaved Siblings
Life-threatening Condition; Palliative Care; Parenting; Pediatrics; Qualitative Description
Description
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.