Children's Cancer Center of Lebanon, American University of Beirut Medical Center, Beirut, Lebanon.
Pediatr Blood Cancer. 2011 Aug;57(2):310-6. doi: 10.1002/pbc.23082. Epub 2011 Mar 10.
Palliative care (PC) is important in Pediatric Oncology as more than 20% of children with cancer still die despite modern treatment. As a significant number of children reside in countries with limited resources; more research in PC is needed there. This study aimed at evaluating the quality of care provided to children with cancer at the Children's Cancer Center of Lebanon (CCCL) during their last month of life as perceived by the bereaved parents.
Between 2002 and 2007, 76 children with cancer treated at CCCL succumbed to their disease. Twenty-nine of the bereaved parents were interviewed at home about the symptoms and suffering experienced by their children during the last month of life, communication with the healthcare team, quality of care delivered, and recommendations for improving care.
Fatigue, anorexia, and pain were the most prevalent symptoms and edema was the most distressing. The overall communication with the healthcare team and the overall quality of care delivered was rated as "very good" to "excellent" by 86.2% and 93.1% of the participants, respectively. Parents suggested improving the organization of care, the communication, and the availability of human and material resources.
This study is the first conducted in Lebanon to evaluate the quality of pediatric palliative care (PPC). The parents' experiences in our country were similar to those described in other countries, religions, and cultures. Significant strengths and weaknesses in the management of the dying children, from the parents' perspective, were uncovered and recommendations for improving practice were made.
尽管现代治疗方法使 20%以上的癌症儿童得以存活，但姑息治疗（PC）在儿科肿瘤学中仍很重要。由于相当数量的儿童居住在资源有限的国家，因此需要在这些国家开展更多的 PC 研究。本研究旨在评估黎巴嫩儿童癌症中心（CCCL）在儿童生命的最后一个月期间，根据丧亲父母的看法，为癌症儿童提供的护理质量。
在 2002 年至 2007 年间，在 CCCL 接受治疗的 76 名癌症儿童去世。29 名丧亲父母在家中接受了访谈，内容涉及他们的孩子在生命的最后一个月中经历的症状和痛苦、与医疗团队的沟通、提供的护理质量以及改善护理的建议。
疲劳、厌食和疼痛是最常见的症状，水肿是最令人痛苦的症状。总体而言，医疗团队的沟通和提供的护理质量分别有 86.2%和 93.1%的参与者评为“非常好”到“优秀”。父母建议改善护理的组织、沟通以及人力和物力资源的可用性。
这是黎巴嫩首次进行的评估儿科姑息治疗（PPC）质量的研究。从父母的角度来看，发现了在管理临终儿童方面的明显优势和劣势，并提出了改善实践的建议。
