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首页> 外文期刊>Progress in Palliative Care >The child's voice in pediatric palliative and end-of-life care
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The child's voice in pediatric palliative and end-of-life care

机译：儿童在小儿姑息和临终关怀中的声音

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摘要

Introduction nnAlthough much is asked clinically and emotionally of children and adolescents who are receiving treatment for a life-threatening illness, they are not routinely asked how they experience the treatment that is intended to save or prolong their lives. Without their subjective reports (the ‘child's voice’), the treatment risk/benefit ratio cannot be fully known. Our purpose is to offer a description of the term ‘child's voice’ and to describe methods used to solicit and validate the ill child's reports of treatment-related symptoms and quality of life during palliative or end-of-life care. nnMethods nnStudy methods included a targeted literature review from three literature databases to develop the description of the ‘child's voice’ and to provide evidence regarding the ability of children with cancer to give voice to their treatment experience. nnResults nnMany children ages 5‐7 years and most children 8 years of age and older in treatment for cancer or receiving end-of-life care were able to validly report their symptoms, treatment experiences, and quality of life through qualitative and quantitative measures. nnDiscussion nnAlthough relevant literature is limited, research findings indicate that a majority of ill children and adolescents are able to report on their treatment-related symptoms and quality of life. The absence of the child's voice in palliative and end-of-life care jeopardizes best care efforts. We believe that seeking the ill child's voice in palliative and end-of-life care should now be standard of care.
机译：简介尽管临床上和情感上对正在接受威胁生命的疾病治疗的儿童和青少年提出了很多要求，但他们并没有常规地询问他们如何体验旨在挽救或延长生命的治疗方法。没有他们的主观报告（“孩子的声音”），就无法完全了解治疗风险/受益率。我们的目的是提供“孩子的声音”一词的描述，并描述用于征求和验证患病儿童在姑息治疗或临终关怀期间与治疗有关的症状和生活质量的报告的方法。 nnMethods nnStudy方法包括来自三个文献数据库的有针对性的文献综述，以发展对“孩子的声音”的描述，并提供有关癌症儿童表达其治疗经验的能力的证据。 nn结果nn许多接受癌症治疗或接受生命终止治疗的5-7岁儿童和大多数8岁及以上的儿童能够通过定性和定量方法有效报告其症状，治疗经验和生活质量。尽管相关文献有限，但研究发现表明，大多数患病的儿童和青少年都能够报告与治疗有关的症状和生活质量。在姑息治疗和临终关怀中缺少孩子的声音会危及最佳护理工作。我们认为，在姑息治疗和临终关怀中寻求患病儿童的声音现在应该成为照护的标准。

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  • 来源
    《Progress in Palliative Care》 |2012年第6期|p.337-342|共6页
  • 作者

    Hinds Pamela S.1; Menard Johanna C.2; Jacobs Shana S.3;

  • 作者单位

    1: Department of Nursing Research and Quality Outcomes, Center for Translational Science, Children's National Medical Center, Washington, DC, USA 2: Department of Nursing Research and Quality Outcomes, Children's National Medical Center, Washington, DC, USA 3: Division of Oncology, Children's National Medical Center, Washington, DC, USA;

  • 收录信息 美国《科学引文索引》(SCI);美国《工程索引》(EI);美国《生物学医学文摘》(MEDLINE);
  • 原文格式 PDF
  • 正文语种 eng
  • 中图分类
  • 关键词

    Palliative and end-of-life care; Pediatric; Pediatric patient-reported outcomes;

    机译：姑息治疗和临终关怀;小儿科儿科患者报告的结局;

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