患有复杂慢性疾病的儿童

Jori F. Bogetz, C. Collura, Christy Torkildson
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引用次数: 0

摘要

患有复杂慢性疾病(CCCs)的儿童有终身护理需求,这得益于儿科专业姑息治疗(PPC)团队的支持。这些需求超出了专业医疗和护理协调的范畴。它们还包括帮助家庭分享他们的价值观,就医疗干预的权衡进行富有同情心的沟通,细心的多模式症状管理,以及对不确定性的安慰措施。患有CCCs的孩子的父母也可以利用PPC团队来倡导未被满足的需求,通过持续的悲伤/失去的情绪来支持他们,并庆祝拥有一个有特殊需要的孩子的里程碑和喜悦。将PPC与医院和社区其他正在进行的服务相结合,可以改善对这些儿童及其家庭的护理。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Children with Complex Chronic Conditions
Children with complex chronic conditions (CCCs) have lifelong care needs that benefit from the support of specialty pediatric palliative care (PPC) teams. These needs extend beyond expert medical care and care coordination. They also include helping families to share their values, compassionate communication about the tradeoffs regarding medical interventions, attentive multimodal symptom management, and a measure of comfort with uncertainty. Parents of children with CCCs can also utilize PPC teams to advocate for unmet needs, support them through emotions that come from ongoing grief/loss, and celebrate the milestones and joys of having a child with special needs. Integration of PPC with other ongoing services in the hospital and in the community can improve care for these children and their families.
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