Symptom Burden, Health-Related Quality of Life and Health Care Utilization Among Children Undergoing Hematopoietic Stem Cell Transplantation: Impact of Parent Sleep, Fatigue and Psychological Distress
Stem cell transplant is an intense treatment for stubborn childhood cancers that have returned or are not remedied with standard therapies. Although stem cell transplant can cure these cancers, it involves high doses of chemotherapy and/or radiation, and often leads to serious side effects and long periods of hospitalization. Children can experience distressing symptoms such as pain, nausea, fatigue, fear and depression. Parents provide essential care throughout the transplant process – often around-the-clock – by monitoring and treating symptoms, managing medications, providing emotional support while meeting other parenting demands. Anxiety, depression and stress have been reported in parents of these children. Parents may also experience sleep disturbances and ensuing fatigue while caring for their children, although there is little known about this relationship. It is important for both physicians and nurses to understand if parents are struggling because these problems may influence their ability to provide the best care for their children.
This study aims to describe the extent to which children's symptoms and quality of life are affected by parents' sleep disturbances, fatigue and emotional issues including stress, anxiety and depression. We know the health and well-being of parents are crucial to successful outcomes for their children, but we have questions that remain to be answered. We expect this study to help us identify root problems and begin to design new solutions. It is our hope that study results influence the way healthcare teams support and care for children (and their parents) throughout this complex and challenging process.