Piil Karin, Juhler Marianne, Jakobsen Johannes, Jarden Mary
Questions or comments about this article may be directed to Karin Piil, RN MHScN, at
J Neurosci Nurs. 2015 Oct;47(5):271-84. doi: 10.1097/JNN.0000000000000158.
BACKGROUND: There is a lack of knowledge regarding the breadth of needs for rehabilitation and supportive care across the disease and treatment trajectory for patients with a high-grade glioma (HGG) and their caregivers. OBJECTIVE: The aim of this study was to elucidate the experiences and needs for rehabilitation and supportive care in patients with HGG and their caregivers. METHODS: Patients with malignant glioma (N = 30) and their caregivers (N = 33) were interviewed five times during the first year of the HGG trajectory. A thematic analysis of interviews at five time points revealed five main themes describing the experiences related to the illness trajectory and needs for rehabilitation and supportive care. RESULTS: The five main themes identified were (a) individual strategy for acquiring prognostic information, (b) shared hope, (c) engagement in health promotion activities, (d) adjustment to symptom limitations, and (e) role transition from family member to caregiver. CONCLUSION: The individual and sometimes opposing preferences among patients and their caregivers for prognostic information is a chosen strategy that supports individual needs in managing the HGG trajectory. Patients and caregivers experience a feeling of solidarity, from which shared hope arises; however, this hope needs to be supported by healthcare professionals. Driven by hope, they seek to optimize the therapeutic effect of the oncological treatments by being engaged together in health promoting activities. As symptoms progressed, the need for information and guidance regarding symptoms and supportive care interventions became evident. Caregivers play a significant supporting role for the patients and need special support themselves and practical assistance especially when symptoms progress. Finally, there is a need for rehabilitation programs that target the cognitive ability of the patients to participate actively.
背景:对于高级别胶质瘤(HGG)患者及其护理人员在疾病和治疗过程中康复及支持性护理需求的广度,人们了解不足。 目的:本研究旨在阐明HGG患者及其护理人员在康复和支持性护理方面的经历与需求。 方法:在HGG病程的第一年,对30例恶性胶质瘤患者及其33名护理人员进行了五次访谈。对五个时间点的访谈进行主题分析,揭示了五个主要主题,描述了与疾病进程相关的经历以及康复和支持性护理的需求。 结果:确定的五个主要主题为:(a)获取预后信息的个人策略;(b)共同的希望;(c)参与健康促进活动;(d)适应症状限制;(e)从家庭成员到护理人员的角色转变。 结论:患者及其护理人员在预后信息方面存在个人偏好,有时甚至相互对立,这是一种支持个体在应对HGG病程中需求的策略。患者和护理人员体验到一种团结感,并由此产生共同的希望;然而,这种希望需要医疗保健专业人员的支持。在希望的驱使下,他们通过共同参与健康促进活动,寻求优化肿瘤治疗的效果。随着症状的进展,对于症状及支持性护理干预措施的信息和指导需求变得明显。护理人员对患者发挥着重要的支持作用,他们自身也需要特别的支持和实际帮助,尤其是在症状进展时。最后,需要针对患者认知能力的康复计划,以便他们能够积极参与。
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