Nursing Practice and Care Structure for Children and Their Families in Need of Pediatric Palliative and End-of-Life Care in Japan

Abstract

Many nurses experience difficulties in pediatric palliative care practice. The study aimed to describe the current situation and structure of pediatric palliative and end-of-life care nursing practices for children and their families in Japan. The research subjects were nurses working in hospitals; facilities for persons with severe physical, motor, and intellectual disabilities; and home-visit nursing stations. The practice ratio was calculated using a 79-item survey form, and factor analysis was conducted. A total of 113 facilities (acceptance rate: 26.5%) and 777 nurses (response rate: 44.6%) responded. Five items had a “Practicing” ratio of ≥90%. In factor analysis, 7 domains were identified: “preparing to face the time of death with the child and family,” “ensuring child-centered care,” “managing symptoms with the child and family,” “considering and coordinating for the child's peaceful time of death,” “understanding and respecting the culture of the child and family,” “assessing the child and family as a whole person,” and “performing self-reflection on an ethical issue.” Nurses' practice of pediatric palliative care differs by practice domain. It is necessary to reflect on the educational programs under development to improve the quality of life of children and their families.