A Booklet for Families of Children Dying with Incurable Cancer: Development and Feasibility Study by Opinions of Pediatric Oncology Specialists

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.