Ferreira Esther Angélica Luiz, Saito Leandro, Sarracini Maycon Rodrigo, Bruno Cristina Helena, Mattos Augustus Relo, Valete Cristina Ortiz Sobrinho, Reiff Rodrigo Bezerra de Menezes
Department of Medicine at the Federal University of São Carlos (DMed UFSCar), São Carlos, SP, Brazil.
Center for Studies in Pain and Palliative Care, Federal University of São Carlos, São Carlos, SP, Brazil.
Res Health Serv Reg. 2024 Nov 28;3(1):18. doi: 10.1007/s43999-024-00054-w.
In Brazil, a country of continental dimensions, the lack of services in the different regions is a major barrier that prevents patients from accessing Pediatric Palliative Care (PPC). If accessing PPC is already challenging, end-of-life care for these patients may also be difficult. Therefore, this study is based on a recent mapping effort, aimed at reflecting on the end-of-life care for children in Palliative Care in Brazil.
Descriptive, cross-sectional study, and online survey research, based on a larger study of Palliative Care Network.
The final sample comprised 90 Pediatric Palliative Care services, which proved to be unevenly distributed across the country. Many services lack a minimum team, 40% face difficulties accessing opioids, and one-third do not provide bereavement care.
There should be more services with better distribution across the country, and a minimum team should be required to provide adequate care for children and adolescents. Strategies to improve symptom control and grief support should be introduced.
It is concluded that continuing education and the inclusion of relevant topics in health courses are necessary. Additionally, health service managers must expand their focus to address these issues effectively.
在幅员辽阔的巴西，不同地区服务的匮乏是阻碍患者获得儿童姑息治疗（PPC）的主要障碍。如果获得PPC本身就具有挑战性，那么为这些患者提供临终关怀也可能困难重重。因此，本研究基于最近的一项摸底工作，旨在思考巴西姑息治疗中儿童的临终关怀情况。
基于对姑息治疗网络的一项更大规模研究开展描述性横断面研究及在线调查研究。
最终样本包括90项儿童姑息治疗服务，结果显示这些服务在全国分布不均。许多服务机构缺乏最低限度的团队，40%的机构在获取阿片类药物方面面临困难，三分之一的机构不提供丧亲照护。
全国应有更多分布更合理的服务机构，并且应为儿童和青少年提供充分照护配备最低限度的团队。应引入改善症状控制和悲伤支持的策略。
得出的结论是，继续教育以及在健康课程中纳入相关主题很有必要。此外，卫生服务管理者必须扩大关注范围以有效解决这些问题。
