The Impact of Sickle Cell Disease on the Family: An Examination of the Illness Intrusiveness Framework

Sickle Cell Disease (SCD) is a genetic disorder that affects approximately 1 out of every 600 African-American newborns (NHLBI, 2006). SCD and its associated symptoms can have widespread impact on both the psychological functioning of the individual diagnosed with the illness and their families. The purpose of this study was to apply the illness intrusiveness framework to better understand the relations among vaso-occlusive pain crises (VOC), child age, pediatric health related quality of life (QOL), and parental psychosocial adjustment. Participants included 103 parent-child dyads. Parents completed a background form, the Brief Symptom Inventory-18, and the Illness Intrusiveness Rating Scale. Children completed the Pediatric Quality of Life Inventory. Results revealed that experiencing a greater frequency of VOC’s was related to decrements in QOL across domains. However, this relation was not mediated by parental perceived illness intrusiveness. Further, results revealed that the effect of frequency of vaso-occlusive pain crises in children with SCD on parental psychosocial maladjustment is mediated by parental illness intrusiveness, which is contingent upon child age