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Updated: May 13, 2025

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Illness Uncertainty in Parents of Children With Cancer-An Exploratory Analysis to Inform Intervention Development.

Ijeoma Julie Eche-Ugwu1,2, Emanuele Mazzola3, Sarah E Stevens4

  • 1Phyllis F. Cantor Center for Research in Nursing and Patient Care Services, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.

Pediatric Blood & Cancer
|April 15, 2025
PubMed
Summary

Parents of children with cancer experience significant illness uncertainty. This study found no links between parent/child characteristics and this uncertainty, suggesting further research is needed for targeted interventions.

Keywords:
Parent Perception of Uncertainty Scale (PPUS)childhood cancerillness uncertaintyparent illness uncertaintyparental copingpsychosocial support

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Area of Science:

  • Pediatric Oncology
  • Psychosocial Oncology
  • Childhood Cancer Research

Background:

  • Illness uncertainty, a struggle to understand cancer-related events, increases distress in parents of children with cancer.
  • While some uncertainty is unavoidable, interventions can target modifiable factors to reduce it.
  • Identifying parent and child characteristics linked to high uncertainty is crucial for effective support.

Purpose of the Study:

  • To describe illness uncertainty levels in parents of children with cancer.
  • To explore associations between illness uncertainty and parent/child characteristics.
  • To identify specific parent subgroups who could benefit from interventions to mitigate uncertainty.

Main Methods:

  • Exploratory cross-sectional analysis of parent-reported survey data.
  • Recruited 89 parents of children with cancer at a US academic pediatric cancer program.
  • Utilized the 31-item Parent Perception of Uncertainty Scale (PPUS) to measure illness uncertainty.

Main Results:

  • The median PPUS score was 74, indicating moderate to high illness uncertainty.
  • 24% of parents reported high uncertainty about future planning and their child's illness trajectory.
  • No significant associations were found between PPUS scores and parent or child characteristics.

Conclusions:

  • Illness uncertainty is prevalent among parents of children with cancer.
  • Current parent and child characteristics do not predict higher levels of uncertainty.
  • Further research is needed to identify specific subgroups that may benefit from targeted interventions for uncertainty management.