Test of a conceptual model of uncertainty in children with cancer

Treatment for childhood cancer has improved to the point where most children currently diagnosed with cancer can be expected to attain long term remission and probably cure. Despite improvements in overall outcome, however, uncertainty continues to pervade the illness experience. Although the literature suggests that uncertainty is one of the primary challenges children face in adjusting to cancer, children's responses to uncertainty have not been systematically studied.; Based on the findings from a preliminary qualitative study with 11 children aged 9 to 12 with cancer, and based on Mishel's (1988) Uncertainty in Illness theory, a conceptual model of uncertainty in children with cancer was developed and tested with 72 children undergoing cancer treatment and 68 of their parents. Instruments to measure children's cancer knowledge, familiarity with cancer, and uncertainty were developed and evaluated for psychometric properties. Time since diagnosis, phase of treatment, children's familiarity with cancer, parent's level of uncertainty, and parent's endorsement of family routines were hypothesized to predict children's level of uncertainty, which was hypothesized to predict children's psychological distress. The proposed model partially fit the data, with child uncertainty positively predicting both anxiety and depressive symptoms, but only parental uncertainty predicting the level of child uncertainty. An alternative model that included age and knowledge as additional antecedent factors provided a much better fit to the data, explaining 21% of the variance in child uncertainty, 27% of the variance in anxiety, and 36% of the variance in depressive symptoms. Children's uncertainty was lower with longer duration of illness and with more cancer knowledge. Children's uncertainty increased in direct relationship to parents' level of uncertainty. Controlling for all these other factors, older children had higher levels of uncertainty.; Thus uncertainty has relevance for children undergoing treatment for serious, life-threatening illness. The striking positive relationship between children's uncertainty and their level of anxiety and depressive symptoms underscores the importance of identifying children who are at greatest risk for high levels of uncertainty, as helping children ameliorate and manage their uncertainty may have real benefit in reducing their psychological distress during treatment.