Psychosocial outcomes among bereaved and non-bereaved parents of children with cancer.

Abstract

9526 Background: Psychosocial outcomes among parents of children with cancer are not well characterized and may affect the well-being of cancer-survivors and other children in the home. In order to examine adverse psychosocial outcomes among bereaved (BR) and non-bereaved (NBR) parents, we conducted a cross-sectional, survey-based study. Methods: Enrolled parents completed the “Resilience in Pediatric Cancer Assessment” (RPCA) at least 6 months after their child completed therapy or died from cancer. The RPCA is comprised of validated instruments to assess resilience, emotional distress, social function, health-related quality of life, and financial hardship. Descriptive statistics were used to characterize groups. Differences between groups were assessed with t or Fisher’s exact tests. Differences between the combined sample and population norms were assessed with one-sample t or binomial tests. Results: 120 (78%) of invited parents completed the RPCA (24 BR; 96 NBR). Compared to the general population, parents had lower levels of self-perceived resilience and higher levels of psychological distress. They were more likely to meet criteria for serious, debilitating psychological distress, or Post-Traumatic Stress Disorder (PTSD). All parents (100%) endorsed at least some PTSD symptoms. Parents also reported less marital satisfaction and family cohesion, and more sleep disturbance and binge drinking than population norms. Conversely, enrolled parents reported higher levels of social support and family adaptability, and were less likely to smoke cigarettes (all p<0.05). Compared to parents of survivors, BR parents were less likely to report appreciation for life, an ability to cope, or deal with stress. They had higher levels of psychological distress, more sleep difficulties, and greater financial hardship (all p<0.05). There were no differences between BR and NBR parents with respect to marital satisfaction, family function, or perceived general health. Conclusions: Parents of children with cancer are at high risk for poor psychosocial outcomes. Compared to parents of survivors, bereaved parents are at additional risk. Interventions aimed at improving resilience and other psychosocial outcomes are needed.