Yoshida Saran, Amano Koji, Ohta Hideaki, Kusuki Shigenori, Morita Tatsuya, Ogata Akiko, Hirai Kei
Center for Cancer Control and Information Services, National Cancer Center, Chuo-ku, Tokyo
Department of Clinical Laboratory, Seirei Mikatahara General Hospital, Hamamatsu City, Shizuoka.
Jpn J Clin Oncol. 2014 Dec;44(12):1181-8. doi: 10.1093/jjco/hyu140. Epub 2014 Sep 23.
The primary endpoints of this study were: (1) to explore the distressing experiences of parents of patients with intractable pediatric cancer in Japan from disclosure of poor prognosis to the present and (2) to explore support they regarded as necessary.
A multi-center questionnaire survey was conducted that included 135 bereaved parents of patients with pediatric cancer in Japan.
The top five distressing experiences shared by over half of the bereaved parents were: 'Realize that the child's disease was getting worse' (96.7%), 'Witness the child's suffering' (96.7%), 'Make many decisions on the basis that the child will die in the not-so-distant future' (83.6%), 'Feel anxious and nervous about the child's acute deterioration' (82.0%) and 'Realize that there was nothing that I could do for the child' (78.7%). The top five support regarded as necessary were: 'Visit the room and speak to the sick child every day' (90.2%), 'Provide up-to-date information' (80.3%), 'Sufficiently explain the disadvantages of each treatment option' (80.3%), 'Show a never-give-up attitude until the end' (78.7%) and 'Make arrangements to allow the sick child to spend time with his/her siblings' (73.8%).
This study identified the common distressing experiences of parents and the support regarded as necessary by them. To provide efficient support with limited manpower in pediatric setting, healthcare professionals should recognize these tasks as high priorities when engage parents of intractable pediatric cancer patients.
本研究的主要终点为：（1）探究日本难治性儿科癌症患者父母从得知预后不良至今的痛苦经历；（2）探究他们认为必要的支持。
开展了一项多中心问卷调查，纳入了135名日本儿科癌症患者的丧亲父母。
超过半数丧亲父母共有的前五项痛苦经历为：“意识到孩子的病情在恶化”（96.7%）、“目睹孩子的痛苦”（96.7%）、“基于孩子将在不久后死亡这一情况做出许多决定”（83.6%）、“对孩子的急性恶化感到焦虑和紧张”（82.0%）以及“意识到自己无法为孩子做任何事情”（78.7%）。被认为必要的前五项支持为：“每天到病房与患病孩子交谈”（90.2%）、“提供最新信息”（80.3%）、“充分解释每种治疗方案的弊端”（80.3%）、“直到最后都表现出永不放弃的态度”（78.7%）以及“安排患病孩子与兄弟姐妹共度时光”（73.8%）。
本研究确定了父母常见的痛苦经历以及他们认为必要的支持。为在儿科环境中以有限人力提供高效支持，医疗保健专业人员在接触难治性儿科癌症患者的父母时，应将这些任务视为高度优先事项。
