Disease-related distress in parents of children with cancer at various stages after the time of diagnosis

Abstract

This study evaluates and describes disease-related distress in parents, with particular focus on the association between the time elapsed since the child's cancer diagnosis and a number of indicators of distress. In a cross-sectional design, 264 mothers and fathers of children with various malignancies completed a multidimensional questionnaire focusing on 11 illness-specific and general indicators of distress. Parents were assessed from 4 weeks to 14 years after the child's diagnosis, and age of children at onset of illness ranged from newly born to 21 years (mean approximately 6 years). The levels of distress related to loss of control, self-esteem, anxiety, depression, sleep disturbances, and psychological and physical distress were lower among parents for whom a longer period of time had elapsed from the time of diagnosis. However, the time elapsed could not explain all of the variation in these stress reactions, or any of the variation in uncertainty, disease-related fear and loneliness. The child's age at diagnosis and treatment situation at assessment were surpassed by time elapsed since diagnosis as predictors of variance in parental distress. The pattern observed indicates the presence of disease-related distress even years after the completion of medical treatment. The findings point to the need for research to identify parents at particular risk of suffering long-term harmful consequences from the prolonged stress of parenting a child with cancer. The necessity of longitudinal studies to evaluate the proportion of acute stress in relation to chronic or cumulative parental stress is emphasized.