BackgroundPediatric palliative care (PPC) is the active total care of children suffering from life-threatening illnesses. Palliative care includes symptom management, psychosocial support, and end-of-life care. Despite significant advances in disease diagnosis and treatment, resources for PPC of children with serious illnesses are limited in Korea. This study aimed to investigate the scale, time trends, disease composition, regional distribution, and unmet needs of children dying from complex chronic conditions (CCCs).MethodsWe examined available information on children who died of CCCs from 2005 to 2014 using the cause of death statistics in Korea.ResultsThere were 36,808 cases of pediatric deaths in Korea during that 10-year period, one-third (12,515 cases, 34.0%) of which were due to CCCs. In 2014, there were 1,044 cases of pediatric deaths due to CCCs (9.8 deaths per 100,000 children) in Korea. The rate of pediatric deaths due to CCCs has declined over this 10-year period. Among CCCs, malignancy was the most common cause of death overall, as well as in children and adolescents, whereas neonatal disorders were the most common cause of death in infants. Although over 1,000 children die from chronic illnesses each year, there are no hospitals or institutes in Korea that meet the minimum standards for specialized PPC.ConclusionTo improve the quality of life of children suffering from CCCs and to support their families who face enormous distress, children with CCCs should be able to access adequate palliative care services. Health authorities should consider supporting the establishment of PPC centers and increasing PPC accessibility in Korea.

This study aimed to identify parental needs for pediatric palliative care and obtain their opinions on developing pediatric palliative care in South Korea. This qualitative research design used inductive and deductive methods. The data were collected through semistructured interviews. A total of 6 parents actively caring for a child with life-threatening conditions and 7 bereaved parents participated in this study. A total of 707 significant statements, 43 subthemes, and 16 themes according to 6 structured matrices (advance care planning and symptom control, psychological and spiritual care, supporting everyday lives, end-of-life care and bereavement support, delivery model of pediatric palliative care, and unmet needs within current services) on the care and bereavement experiences of parents of children with life-threatening conditions were derived. Palliative care for children is a multidisciplinary approach to evaluate, prevent, and manage multifaceted symptoms and to support children with life-threatening conditions and their families. Our findings suggest that parents of children with life-threatening conditions in South Korea present multidimensional needs across the diagnostic groups and the illness trajectories and inform policy makers and health care professionals to design a pediatric palliative care delivery model. Further studies examining the unmet needs are required to enhance the quality of pediatric palliative care.