Western Australian Centre for Cancer and Palliative Care and Curtin Health Innovation Research Institute, Curtin University of Technology, Perth, Australia.
Palliat Med. 2010 Jul;24(5):473-9. doi: 10.1177/0269216309360118. Epub 2010 Feb 1.
Patients diagnosed with high-grade gliomas have a poor prognosis and limited life expectancy, and often experience rapid decline in function. Caring for a patient with high-grade glioma is particularly stressful because caregivers are faced not only with cancer-related caregiving issues, but also issues relating to caring for someone with cognitive impairment. This study aimed to articulate the experiences of family caregivers of people diagnosed with high-grade glioma and to describe their information and support needs. A grounded theory method was adopted. Twenty-one family caregivers of people with high-grade glioma were interviewed using a semi-structured interview guide. A constant comparison method of data analysis was employed. A central theme, A Time of Rapid Change and two sub-themes, Renegotiating Relationships and Learning to be a Caregiver, emerged to describe the experiences of participants. Caregiving was characterised by numerous role and life changes from the moment of diagnosis. Caregivers in this study reported experiences similar to those described by caregivers of people with other cancers. What differed for this group was the rapidity of change and the need for immediate information and support to assist with caring for a person with high-grade glioma.
被诊断患有高级别神经胶质瘤的患者预后不良,预期寿命有限,且功能迅速下降。照顾高级别神经胶质瘤患者的压力特别大,因为护理人员不仅要面对与癌症相关的护理问题,还要面对照顾认知障碍患者的问题。本研究旨在阐明被诊断患有高级别神经胶质瘤患者的家庭护理人员的经历,并描述他们的信息和支持需求。采用扎根理论方法。使用半结构化访谈指南对 21 名高级别神经胶质瘤患者的家庭护理人员进行了访谈。采用数据恒比分析方法。一个中心主题,快速变化的时期和两个子主题,重新协商关系和学习成为照顾者,出现来描述参与者的经历。从诊断的那一刻起,护理就有了许多角色和生活上的变化。本研究中的护理人员报告的经历与其他癌症患者的护理人员所描述的经历相似。对这个群体来说不同的是,变化的速度和对即时信息和支持的需求,以帮助照顾高级别神经胶质瘤患者。