Zelcer Shayna, Cataudella Danielle, Cairney A Elizabeth L, Bannister Susan L
Pediatric Hematology Oncology, Children's Hospital, London Health Sciences Center, 800 Commissioners Road E, London, Ontario, Canada.
Arch Pediatr Adolesc Med. 2010 Mar;164(3):225-30. doi: 10.1001/archpediatrics.2009.284.
To explore the end-of-life experience of children with brain tumors and their families.
Qualitative analysis of focus group interviews.
Children's Hospital, London Health Sciences Center.
Twenty-five parents of 17 children who had died of brain tumors.
Parents participated in 3 semistructured focus group interviews.
Themes identified through thematic analysis of interview transcripts.
Qualitative analysis identified 3 primary themes. (1) Parents described the dying trajectory of their child as characterized by progressive neurologic deterioration, with the loss of the ability to communicate as a turning point. Parental coping mechanisms included striving to maintain normality and finding spiritual strength through maintaining hope and in the resilience of their child. (2) Parental struggles during this phase included balancing competing responsibilities and speaking with their child about death. (3) Barriers to achieving a home death included suboptimal symptom management, financial and practical hardships, and inadequate community support. A fourth, secondary theme concerned the therapeutic benefits of the interview.
The neurologic deterioration that characterizes the dying trajectory of children with brain tumors may create significant challenges for health care professionals and the children's parents, supporting the need for increased awareness of the distinct issues in the palliative care of children with brain tumors and for early anticipatory guidance provided for families.
探讨脑肿瘤患儿及其家庭的临终体验。
焦点小组访谈的定性分析。
伦敦健康科学中心儿童医院。
17名死于脑肿瘤患儿的25位家长。
家长参与3次半结构化焦点小组访谈。
通过对访谈记录进行主题分析确定的主题。
定性分析确定了3个主要主题。（1）家长将孩子的死亡轨迹描述为以进行性神经功能恶化为特征，失去沟通能力是一个转折点。家长的应对机制包括努力维持正常生活，以及通过保持希望和孩子的恢复力来寻找精神力量。（2）这一阶段家长面临的困难包括平衡相互冲突的责任以及与孩子谈论死亡。（3）在家中离世的障碍包括症状管理欠佳、经济和实际困难以及社区支持不足。第四个次要主题涉及访谈的治疗益处。
脑肿瘤患儿死亡轨迹所具有的神经功能恶化特征可能给医护人员和患儿家长带来重大挑战，这支持了提高对脑肿瘤患儿姑息治疗中独特问题的认识以及为家庭提供早期预期指导的必要性。
