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Parenting in Serious Pediatric Illness: A Mixed Methods Study (GP768)

Objectives: Describe how parents prioritize parenting tasks and goals for their seriously ill and healthy children Illustrate how the process of trading-off one child's needs to meet those of another can contribute to parents' distress in serious pediatric illness.

Importance: Nearly two-thirds of children requiring palliative care services have siblings, thus parents must consider their children's various needs. Exploring parenting in serious pediatric illness and palliative care provides insight into parents' challenges and sources of distress, as well as opportunities for support.

Objective(s): The objective of this study was to describe parenting seriously ill children and their healthy siblings.

Method(s): Concurrent, cross-sectional, mixedmethods study to describe challenges parents face prioritizing tasks and goals for each child with qualitative data, compare parents' tasks and goals for seriously ill children and healthy siblings with quantitative data using a discrete choice experiment of parenting attributes, and describe parenting in terms of the process of prioritizing tasks and goals for all children in the family.

Results: Participants included 31 parents of seriously ill children who have healthy siblings and were admitted to a children's hospital. Qualitative interviews revealed how parents managed children's needs and their perceptions of the toll it takes. Quantitative data revealed parents prioritized ''making sure my child feels loved'' highest for ill and healthy children. Other goals for healthy siblings focused on maintaining emotional connection and regularity within the family and for ill children focused on illness management. Mixed methods analysis revealed parents engaged in a process of decision-making and tradingoff competing demands by considering needs which ultimately transformed the meaning of parenting.

Conclusion(s): Parental attempts to balance family needs may prompt them to trade-off one child's needs in order to meet those of another, even if this does not align with their parenting goals or perceived duties. This discrepancy may lead parents to believe they are not fulfilling their definition of ''being a good parent.'' Impact. Without understanding the various duties among which parents feel pulled to fulfill, providers may have an incomplete picture of family life. Future research can examine trade-offs and associated effects and how to support parent problem-solving and decision-making around trade-offs.

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Journal article
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Journal Titles
Journal of Pain and Symptom Management
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