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瑞士儿童肿瘤姑息治疗的障碍:一项焦点小组研究

Barriers to Palliative Care in Pediatric Oncology in Switzerland: A Focus Group Study.

作者信息

Rost Michael, De Clercq Eva, Rakic Milenko, Wangmo Tenzin, Elger Bernice

机构信息

University of Basel, Basel, Switzerland.

University of Bern, Bern, Switzerland.

出版信息

J Pediatr Oncol Nurs. 2020 Jan/Feb;37(1):35-45. doi: 10.1177/1043454219871082. Epub 2019 Sep 3.

Abstract

For children with cancer, early integration of pediatric palliative care in conjunction with curative treatments is recommended. In Switzerland, pediatric palliative care is mostly provided by an interdisciplinary primary oncology team that is mainly composed of nurses. However, only a small fraction of children receive pediatric palliative care and only a minority of them in a timely manner. The main aim was to identify barriers to the provision of pediatric palliative care in Swiss pediatric oncology. This qualitative study consisted of five focus groups. In total, 29 pediatric oncology providers participated (13 nurses, 11 physicians, 4 psycho-oncologists, 1 social worker). Data were analyzed employing applied thematic analysis. Analysis revealed eleven barriers: lack of financial resources, lack of prejob education regarding pediatric palliative care, lack of awareness in politics and policy making, absence of a well-established nationwide bridging care system, insufficient psychosocial and professional supervision for staff, understaffing, inadequate infrastructure of hospitals, asymmetry of factual and emotional knowledge between parents and providers, cultural aspects, irrational parental hopes, and "the unspoken." Awareness should be raised for pediatric palliative care (in particular in demarcation from palliative care in adults) among politics and policy makers which could lead to increased financial resources that, in turn, could be used to improve bridging care, hospital's infrastructure, and team support. More flexibility for care determining factors is needed, for example, with respect to convening team meetings, short-termed staffing, and reimbursement at the interface between inpatient and outpatient services.

摘要

对于患有癌症的儿童,建议在进行根治性治疗的同时尽早纳入儿科姑息治疗。在瑞士,儿科姑息治疗主要由一个跨学科的初级肿瘤学团队提供,该团队主要由护士组成。然而,只有一小部分儿童接受儿科姑息治疗,而且其中只有少数人能及时得到治疗。主要目的是确定瑞士儿科肿瘤学中提供儿科姑息治疗的障碍。这项定性研究包括五个焦点小组。共有29名儿科肿瘤学服务提供者参与(13名护士、11名医生、4名心理肿瘤学家、1名社会工作者)。采用应用主题分析法对数据进行分析。分析揭示了11个障碍:缺乏财政资源、缺乏关于儿科姑息治疗的岗前教育、政治和政策制定方面缺乏认识、缺乏完善的全国性过渡性护理系统、对工作人员的心理社会和专业监督不足、人员配备不足、医院基础设施不完善、家长与服务提供者之间事实和情感知识的不对称、文化方面、家长不理性的期望以及“未说出口的话”。应提高政治和政策制定者对儿科姑息治疗(特别是与成人姑息治疗的区别)的认识,这可能会带来更多财政资源,进而可用于改善过渡性护理、医院基础设施和团队支持。在护理决定因素方面需要更大的灵活性,例如在召开团队会议、短期人员配备以及住院和门诊服务接口处的报销方面。

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