ABSTRACT
Objectives: The study purpose was to examine quality-of-life (QOL) of pediatric cancer patients at end-of-life and related factors using a QOL proxy rating scale from the nurse’s perspective. Methods: We conducted a survey in October 2015−February 2016. The subjects to be surveyed were nurses who were primarily in charge of patients with childhood cancer at end-of-life. We investigated 22 items of the Good Death Inventory for Pediatrics (GDI-P) and their related factors. Results: In total, 53 proxy evaluate questionnaires were completed from 18 centers. Among the eight factors of GDI-P, “Relief from physical and psychological suffering” was the lowest. The total score of GDI-P was positively correlated with the structure and process of care (r=0.58). Although there was a bias in the number of cases, in the case of the place of death was the intensive care unit, the total score of GDI-P was lower than home and the general ward. Conclusions: It was suggested that the top priority in improving QOL was relief from suffering and the structure and process of care were related to QOL.
ABSTRACT
Objective: The purpose of this study was to clarify the job types and related factors that physicians and nurses feel easy to consult about pediatric cancer patients’ and their families’ end of life care. Design and methods: We conducted a self-reported questionnaire survey for physicians and nurses who have experienced at least one case of end of life care of childhood cancer. In the survey, we asked participants about whether they feel easy to consult about 15 job types such as palliative care team, certified nurse specialist in child health nursing, physicians and nurses of the same team. Results: A total of 427 physicians and nurses participated in this study. More than 70% of the respondents felt that it felt easy to consult with three job types such as “Nurses of the same team” and “Physicians of the same team”. Job types of the respondents were the main related factors in the most job types. Physicians felt easier to consult with person in each job type than nurses. Consideration: It was suggested that it would be necessary to consider the systems that allow individual professionals to feel easy to consult with persons in each job type, such as specifying consultation methods and procedures for each job type, and introducing inter-professional education.
ABSTRACT
The purpose of this study was to clarify feasibility of a booklet for families of children dying with incurable cancer. Of 267 pediatric oncology specialists, 76 (28%) participated in this cross-sectional survey. Ninety-three percent of participants answered that they were “likely to use” the booklet, and 86% percent answered that they believed the booklet was “helpful” for families. Some participants described various advantages of its use as follows: “able to communicate something that is difficult to put into words,” “easy to understand for families,” “families can read whenever they choose to,” and “able to grasp the direction of dying.” In contrast, other participants described points of attention of use as follows: “optimal timing to bring out,” “acceptance of families,” “direction as interdisciplinary team,” “confidential relationship between families and interdisciplinary team,” “disinclination among health care providers,” and “information volume of the booklet.” Thus, our results validated feasibility of the booklet. In conclusion, pediatric oncology specialists should provide their support of utilizing the booklet for families and assessing each family condition and advantage/attention of using the booklet.