The hospital costs of caring for children with cancer: A description of hospital resource utilization

In the United States 8,500-9,500 children under the age of 16 years are newly diagnosed with cancer each year, and approximately 2,300 of them die from cancer and its associated complications each year. Parents and siblings, providers, and health care institutions bear emotional and psychological, physical and mental health, and time and financial burdens of caring for these children. This dissertation is composed of three papers describing the burdens of caring for a child with cancer on parents, providers, and hospitals and highlighting the differences in emotional and psychological well-being, physical and mental health outcomes, and time and financial requirements of providing care to children who die and those who survive.;In the first paper, emotional and psychological aspects are explored through a dimensional analysis to clarify the concept, good death of a child with cancer, and to examine it from 3 perspectives: the child, the child's family, and the health care providers. The analysis revealed that 'good death of a child' is a highly variable concept, and has different meanings when viewed from each of the three perspectives.;In the second paper, the literature was analyzed to identify the associations between parental grief after the death of a child and the subsequent health of the parents. Results showed that existing studies have produced conflicting results and that methodological issues exist which bring many results into question. Based on these findings, more methodologically sound research is necessary to clarify the relationship between parental grief and health.;The final paper is a secondary analysis of administrative and tumor registry data describing patterns and costs of hospital resource utilization by 223 children with leukemia and CNS tumors. The paper examines differences in utilization and cost between 3-year survivors and children who died within three years of diagnosis. Results revealed that children who died had significantly more inpatient time and that their care cost the hospital significantly more than those who survived.;As a whole, this dissertation reveals that caring for a child with cancer can place significant strain on families, providers and health care institutions.