Health-Related Quality of Life Perceptions and Experiences Among Pediatric Hematopoietic Cell Transplant Recipients and Their Caregivers

Abstract

Research indicates that pediatric HCT recipient and caregiver perception of health-related quality of life (HRQoL) is in fair to moderate agreement, indicating that caregivers may not accurately reflect their child’s HRQoL. The purpose of this qualitative descriptive study was to explore HRQoL perceptions and experiences among pediatric HCT recipients and their caregivers. One-on-one semi-structured interviews were conducted in person or via telephone with four pediatric HCT recipient-mother dyads. Thematic data analysis generated one overarching theme, We are in a very different world when you’re in oncology, and two main themes, 1) Some things just suck…some things did suck, they were horrifying and, 2) What am I supposed to do with someone…who went through all this? Findings revealed that pediatric HCT recipient - caregiver HRQoL perceptions and experiences were similar and that a major HRQoL barrier was the lack of assistance with transitioning pediatric HCT recipients back to school and resocialization.