Illness uncertainty refers to the experience of illness-related events that are unpredictable, ambiguous, and/or complex in nature. For children with cancer and their parents illness uncertainty is ubiquitous as they are suddenly and repeatedly confronted with ambiguous physical symptoms, complex treatment regimens and – most fundamentally – unpredictability regarding the child’s survival. Illness uncertainty is also a consistent and robust predictor of psychological distress. Therefore, the inherent uncertainty of pediatric cancer places both children with cancer and their parents at increased risk for psychological distress e.g., depression, post-traumatic stress symptoms (PTSS) for years following diagnosis and treatment. To date no study exists that provides a psychosocial intervention to parents of children newly diagnosed with cancer and also asses the effect on child psychological functioning.
The proposed trial will test the efficacy of the parent-focused clinic-based Parent Uncertainty Management Intervention (PUMI) to improve the outcomes of children newly diagnosed with cancer and their parents. Two hundred and ninety-six parents of children between two and 18 years of age will be randomly assigned to receive equivalent doses of either the PUMI or an Education/Support (ESO) group. Theoretically driven by Mishel’s model of illness uncertainty, the PUMI will teach parents about uncertainty prevention and management through the use of medically-specific communication, information management, and problem-solving skills via in-clinic sessions and an online portal. Parents and children (> 8 years-old) will complete measures online at baseline, 1-week, and 3-, 6-, and 12-month follow-ups.