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姑息性肿瘤血液科患者的非正式照料者:隐形访客:现有文献的详尽综述

Informal Caregivers of Palliative Oncohematologic Patients: The Invisible Guests: An Exhaustive Review of the Literature Available.

作者信息

Uceda-Torres María Elena, Rodríguez-Rodríguez Juan Nicolás, Alvarado-Gómez Francisco, Sánchez-Ramos José Luis, McGrath Pam

机构信息

U.G.C. Palliative Care, Hospital "Vázquez Díaz", Huelva, Spain.

U.G.C. Hematology, Hospital "Juan Ramón Jiménez", Huelva, Spain

出版信息

Am J Hosp Palliat Care. 2016 Aug;33(7):691-702. doi: 10.1177/1049909115582007. Epub 2015 Apr 22.

Abstract

Informal caregivers are crucial members of the teams that care for palliative patients with cancer, including those with oncohematological malignancies. Publications concerning specific aspects of this latter group of carers are limited. This literature review indicates that palliative oncohematologic patients' caregivers do not differ from those of patients with solid tumors in ethical and related problems. However, there are specific problems for the former group with regard to negotiating the curative system, which are experienced as distressing, often without support from the health system and without offers of the possibility of being referred to palliative teams that they would have valued as very positive. Although this tendency seems to be changing, there is still considerable work to be done to improve the role of these carers.

摘要

非正式照护者是癌症姑息治疗患者护理团队的关键成员,包括患有血液肿瘤恶性疾病的患者。关于后一组照护者具体方面的出版物有限。这篇文献综述表明,姑息性血液肿瘤患者的照护者在伦理及相关问题上与实体瘤患者的照护者并无差异。然而,前一组照护者在与治愈性医疗体系协商方面存在特定问题,这些问题令人痛苦,而且往往得不到卫生系统的支持,也没有被转介到他们认为非常有益的姑息治疗团队的可能性。尽管这种趋势似乎正在改变,但仍有大量工作要做,以改善这些照护者的作用。

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