Robert Rhonda, Razvi Shehla, Triche Lisa L, Bruera Eduardo, Moody Karen M
Division of Pediatrics, The University of Texas M.D. Anderson Cancer Center, 1515 Holcombe Boulevard, Unit 87, Houston, TX 77030, USA.
Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas M.D. Anderson Cancer Center, Houston, TX 77030, USA.
Children (Basel). 2022 Feb 17;9(2):274. doi: 10.3390/children9020274.
Professional education pertaining to end-of-life care with pediatric oncology patients is limited. Pediatric trainees learn about end-of-life conversations largely from the provider's perspective. Bereaved parents can inform the education of oncologists and the interdisciplinary team by sharing their perceptions and preferences through personal narratives.
The aim of this project was to enhance the healthcare teams' understanding of bereaved parents' end-of-life care preferences through narratives. Bereaved parents were recruited from our institution's Pediatric Supportive Care Committee membership. Parents were tasked with identifying elements of care that were of the greatest importance to them, based upon their personal experiences during their child's end-of-life care. Narratives were analyzed using standard qualitative methods.
Parents of five patients participated, including four mothers and three fathers. Ten themes summarizing essential elements of end-of-life care were identified, including early ongoing and stepwise prognostic disclosure, honoring the child's voice, support of hope and realism, anticipatory guidance on dying, and continued contact with the bereaved.
Bereaved parents emphasize the need for providers to have ongoing honest conversations that support realism and hope that can help them to best prepare for their child's end of life and to remain in contact with them after death.
针对儿科肿瘤患者临终关怀的专业教育有限。儿科实习生主要从医护人员的角度了解临终谈话。丧亲的父母可以通过个人叙述分享他们的看法和偏好，从而为肿瘤学家及跨学科团队的教育提供信息。
本项目的目的是通过叙述增强医疗团队对丧亲父母临终关怀偏好的理解。从本机构的儿科支持性护理委员会成员中招募丧亲父母。父母们的任务是根据他们孩子临终护理期间的个人经历，确定对他们最重要的护理要素。使用标准定性方法对叙述进行分析。
五名患者的父母参与其中，包括四名母亲和三名父亲。确定了十个总结临终关怀基本要素的主题，包括早期持续且逐步的预后披露、尊重孩子的意见、支持希望与现实、临终预期指导以及与丧亲者持续联系。
丧亲的父母强调医护人员需要进行持续、诚实的谈话，支持现实与希望，这有助于他们为孩子的临终做好最佳准备，并在孩子去世后与他们保持联系。
