Nelson Harriett, Mott Sandra, Kleinman Monica E, Goldstein Richard D
Critical Care Transport Team, Boston, Massachusetts, USA.
Cardiovascular and Critical Care Programs, Boston, Massachusetts, USA.
J Pain Symptom Manage. 2015 Sep;50(3):375-80. doi: 10.1016/j.jpainsymman.2015.04.004. Epub 2015 Apr 16.
Pediatric palliative transports, the practice of transporting critically ill children home for end-of-life care including extubation, are an option for children requiring high levels of medical support at end of life. Little is known about the experience from the perspective of the children and families.
To understand parents' perspectives on the experience of pediatric palliative transports.
Open-ended interviews were conducted using a qualitative descriptive design. Each parent was asked to reflect on the process of bringing their child home to die. Conventional content analysis was used for data analysis.
Nine parents participated. The decision to transport the child home was a process motivated by promises to the child or a conviction that it was the right thing to do. The parents were gratified by the attention to safety and detail involved, but the actual transport home was stressful to them. The arrival home was typically recounted as a celebration. Being home provided time with the child in the context of their family and contributed to their lives. Memories of the experience brought comfort and a sense of fulfillment.
Each parent found the experience positive and meaningful. The child's experiences when alive, not events at the time of death, were remembered. All parents recommended palliative transports, emphasizing the importance of home and family, when desired. These interviews strongly suggest that palliative transports make a positive, important contribution to the care of at least some children facing end of life, and their families.
儿科姑息转运是指将危重病患儿送回家中进行临终护理（包括拔管）的做法，这是那些在生命末期需要高水平医疗支持的儿童的一种选择。从儿童及其家庭的角度来看，人们对这一经历知之甚少。
了解父母对儿科姑息转运经历的看法。
采用定性描述性设计进行开放式访谈。每位家长都被要求反思将孩子带回家中离世的过程。数据分析采用常规内容分析法。
9位家长参与了研究。将孩子转运回家的决定是一个由对孩子的承诺或坚信这是正确之事所推动的过程。家长们对转运过程中对安全和细节的关注感到欣慰，但实际的回家之旅让他们倍感压力。回到家通常被描述为一场庆祝。在家中能让他们在家庭环境中陪伴孩子，丰富了他们的生活。这段经历的回忆带来了慰藉和满足感。
每位家长都觉得这段经历积极且有意义。人们记住的是孩子活着时的经历，而非死亡时的事件。所有家长都推荐姑息转运，强调了家与家人在有需求时的重要性。这些访谈有力地表明，姑息转运对至少一些面临生命末期的儿童及其家庭的护理做出了积极且重要的贡献。
