Beyond Anxiety and Grief: Mapping the Emotional Landscape of Parents Facing a Childhood Cancer Diagnosis

Abstract

Objective: We sought to explore the variation in emotional responses and identify clusters of emotional patterns associated with sociodemographic, clinical, and familial factors. Methods: A large-scale survey with questions on demographics, experiences, and emotions at the time of diagnosis was sent to childhood cancer caregivers and completed between August 2012 and April 2019. Dimensionality reduction and statistical tests for independence were used to investigate relationships between sociodemographic, clinical, and psychosocial factors and 32 representative emotions. Results: Data from 3142 respondents were analyzed. Through principal components analysis and t-distributed stochastic neighbor embedding analysis, three clusters of emotional responses were identified, captured 44%, 20% and 36% of respondents, respectively. Hallmark emotions within each cluster were "anger and grief" (Cluster 1), "pessimism, relief, impatience, insecurity, discouragement, and calm" (Cluster 2), and "hope" (Cluster 3). Cluster membership was associated with differences in parental factors, such as educational attainment, family income, and biological parent status, as well as child-specific factors, including age at diagnosis and cancer type. Conclusions: The study revealed substantial heterogeneity in emotional responses to a child's cancer diagnosis than previously recognized, with differences linked to both caregiver and child-related factors. These findings underscore the importance of developing responsive and effective programs to improve targeted support for caregivers from the time of diagnosis throughout a family's childhood cancer journey.