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

ABSTRACT Background Illness uncertainty—a state of struggling to make sense of illness‐related events—contributes to distress among parents of children with cancer. While some illness uncertainty is inescapable, uncertainty may be minimized through interventions targeting modifiable antecedents. Within the context of childhood cancer, parent and child characteristics associated with high illness uncertainty have not been identified. We sought to describe illness uncertainty among parents of children with cancer and explore potential associations with parent/child characteristics to identify populations that might benefit most from interventions to mitigate illness uncertainty. Procedure We conducted an exploratory cross‐sectional analysis of parent‐reported survey data. We recruited parents of children with cancer cared for at a single academic pediatric cancer program in the northeastern United States who participated in two prospective studies ( n = 89 parents) between September 2016 and June 2018. Illness uncertainty was measured by the 31‐item Parent Perception of Uncertainty Scale (PPUS). Results PPUS score distribution was slightly right‐skewed. Median PPUS score was 74, with an interquartile range of 67–83. Twenty‐four percent of parents strongly endorsed uncertainty regarding future planning, what their child can and cannot do, and their child's illness trajectory. Twenty percent strongly endorsed uncertainty from unanswered questions. Only 3% of parents reported their child's treatment regimen was too complex to understand. No significant associations were found between PPUS and parent/child characteristics. Conclusions Future studies should examine additional parent and child characteristics to identify whether specific subgroups of parents may benefit most from interventions to reduce and manage illness uncertainty.