Children with Hepatitis C: The Impact of Disease and Treatment on Patients, Caregivers and Families

Purpose Previous research on children with HCV has examined patient psychosocial outcomes but little is known about the impact of HCV and its prolonged treatment, which includes weekly injections and oral medications for 6–12 months, on caregivers and families. The present study aimed to address this gap. Design and Methods Using a case series design (N = 10), baseline distress levels of individuals and families as well as changes during HCV treatment were examined. A brief patient, caregiver, and family assessment packet was given before and immediately after treatment, but before the final outcome of treatment was known. During the study period, 10 families at our site began treatment for HCV. Each family was given a battery assessing patient quality of life, (the Pediatric Quality of Life Inventory; PedsQL), caregiver distress related to their child's illness (Impact of Events Scale; IES), and overall family functioning (Family Assessment Device; FAD). Results At baseline, patients displayed poorer quality of life than population norms, caregiver distress was elevated and family functioning was also in the “stressed” range. After treatment, all parameters worsened. Conclusions In conclusion, in this case series of patients in treatment for HCV, significant psychosocial distress was noted for individuals and families and this was exacerbated over the course of treatment. Practice Implications Caregivers may benefit from additional support given the implications of HCV and grueling nature of its treatment. Broadly, the impact of continuous intensive treatments on families perhaps should be monitored.