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首页> 外文期刊>Journal of Clinical Oncology >Place and provision of palliative care for children with progressive cancer: a study by the Paediatric Oncology Nurses' Forum/United Kingdom Children's Cancer Study Group Palliative Care Working Group.
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Place and provision of palliative care for children with progressive cancer: a study by the Paediatric Oncology Nurses' Forum/United Kingdom Children's Cancer Study Group Palliative Care Working Group.

机译：进行性癌症儿童的姑息治疗的地点和提供：儿科肿瘤护士论坛/英国儿童癌症研究小组姑息治疗工作组的一项研究。

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PURPOSE: The purpose of this study was to describe and show effectiveness of the outreach team model of palliative care (PC) in allowing home death for children with incurable cancer. PATIENTS AND METHODS: Over 7 months, 185 children from 22 United Kingdom oncology centers were recruited to a prospective questionnaire survey. RESULTS: One hundred sixty-four children from 22 centers died (median age, 8.7 years; 88 boys, 76 girls). One hundred twenty-six families completed two or more questionnaires. One hundred twenty (77%) of 155 with complete data died at home. Preference for home death was recorded in 90 (68%) of 164 and 132 (80%) 164 at study entry and last month of life, respectively. Death occurred in preferred place for 84 (80%) of 105 with recorded preference at entry. Forty-one (25%) of 164 and 68 (41.5%) of 164 needed no outpatient or inpatient hospital visits, respectively. A named individual provided on-call PC advice by phone or home visit in 22 (100%) and 18 (82%) of 22 oncology centers, respectively. As PC progressed, involvement of oncologist and social worker appeared less, whereas pediatric oncology outreach nurse specialists (POONSs) remained prominent. CONCLUSION: Preference for home death expressed by families in our study is similar to others, but the proportion of children actually able to die there is higher. Home death is facilitated by this model. Key components are POONSs, pediatric palliative and/or oncology specialist, and general practitioner. Professional roles change during PC and after death. An ongoing role for the oncology team in bereavement support is highlighted.
机译：目的：本研究的目的是描述和显示姑息治疗外展团队模型在使无法治愈的癌症儿童家庭死亡方面的有效性。患者与方法：在7个月的时间里，从英国22个肿瘤学中心招募了185名儿童进行前瞻性问卷调查。结果：22个中心的164名儿童死亡（中位年龄为8.7岁;男孩88名，女孩76名）。 126个家庭完成了两个或更多调查问卷。 155个拥有完整数据的网站中有120个（77％）在家中死亡。在入学时和去世前一个月，分别有164人的90（68％）和132（80％）164的家庭死亡偏好。在首选地点发生的死亡人数为105（84）（80％），录入时记录有偏爱。 164名患者中有41名（25％）和164名患者中没有68名（41.5％）不需要门诊或住院。一位具名人士分别在22个肿瘤学中心的22个（100％）和18个（82％）中通过电话或家访提供了应召唤的PC建议。随着PC的发展，肿瘤学家和社会工作者的参与似乎减少了，而儿科肿瘤外展护理专家（POONS）仍然很突出。结论：在我们的研究中，家庭对家庭死亡的偏好与其他家庭相似，但实际能够在那里死亡的儿童比例更高。这种模式促进了家庭死亡。关键成分是POONS，小儿姑息和/或肿瘤学专家以及全科医生。在PC期间和死亡之后，专业角色会发生变化。重点介绍了肿瘤学小组在丧亲支持中的持续作用。

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