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

Published online by Cambridge University Press:  14 October 2015

Kim Mooney-Doyle  and
Janet A. Deatrick
Kim Mooney-Doyle*
Affiliation:
The Center for Global Women's Health and The Center for Health Equity Research, University of Pennsylvania School of Nursing, Philadelphia, Pennsylvania
Janet A. Deatrick
Affiliation:
Center for Health Equity Research, University of Pennsylvania School of Nursing, Philadelphia, Pennsylvania
*
Address correspondence and reprint requests to: Kim Mooney-Doyle, University of Pennsylvania School of Nursing, 418 Curie Boulevard, Philadelphia, Pennsylvania19104. E-mail: kemooney@nursing.upenn.edu.
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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.

Keywords

Palliative carePediatricParentingQualitative descriptionLife-threatening condition
Type
Original Articles
Information
Palliative & Supportive Care , Volume 14 , Issue 3 , June 2016 , pp. 187 - 198
Copyright
Copyright © Cambridge University Press 2015 

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