Hannan Julia, Gibson Faith
Symptom Care Team, Level 6, Southwood Building, Great Ormond Street Hospital for Children NHS Trust, Great Ormond Street, London WC1N 3JH.
Int J Palliat Nurs. 2005 Jun;11(6):284-91. doi: 10.12968/ijpn.2005.11.6.18296.
to explore retrospectively the decisions made by parents regarding their choice of place of care at time of death for their child with advanced cancer.
cross-sectional descriptive study.
interpretive phenomenological analysis.
parents of five children who had died of advanced cancer, whose care was overseen by the participating paediatric oncology centre in the southeast of England. Three children died at home and two in hospital.
seven themes were identified, four of which will be discussed: valuing time left; needing to feel safe and secure; we didn't know what to expect; and the difference between specialist and non-specialist staff. Families' decisions were instinctive or intuitive rather than a calculated weighing up of options. Families identified aspects of care that were both valuable and could be improved.
parents value the time that their children have to live when they know that their child's disease is incurable. Decisions around place of care are just that, decisions around place of care not place of death. Families valued the same types of support from staff regardless of the setting in which care was provided and found the same deficiencies difficult.
回顾性探究晚期癌症患儿家长在孩子临终时对护理地点选择所做的决定。
横断面描述性研究。
诠释现象学分析。
五名死于晚期癌症患儿的家长，其护理由英格兰东南部参与研究的儿科肿瘤中心负责。三名患儿在家中去世，两名在医院去世。
确定了七个主题，其中四个将予以讨论：珍视剩余时间；需要感到安全；我们不知会发生什么；以及专科与非专科医护人员的差异。家庭的决定是本能的或直觉的，而非对各种选择进行审慎权衡。家庭指出了护理中既有价值又可改进的方面。
当家长知道孩子的疾病无法治愈时，他们珍视孩子所剩的生存时间。关于护理地点的决定就是关于护理地点的决定，而非死亡地点的决定。无论护理提供的环境如何，家庭都重视医护人员提供的相同类型的支持，并且发现同样的不足之处令人困扰。
