目的:本研究的目的是从患者自身及其近亲的角度探讨与胶质母细胞瘤一起生活的经历。关注生活状况的变化和对支持的需求。
方法:对12例患者进行了22次半结构化访谈(平均年龄61岁,7男,5名女性)和10名亲属(平均年龄56岁,3男,7女)。亲属由伴侣组成(n=7),子(n=1),姐妹(n=1),或朋友(n=1)。问题集中在生活状况的变化和面对这些变化所需的支持上。采用归纳定性内容分析(QCA)对数据进行分析。
结果:患有胶质母细胞瘤极大地改变了患者和亲属的生活。认知症状(例如,言语和记忆障碍),身体机能恶化(例如,麻痹),和心理功能(例如,行为改变,焦虑)可能导致家庭动力受损,社会孤立,对未来的恐惧。其他家庭成员的支持,朋友,医疗保健专业人员至关重要。及时,有形的,以及医疗保健系统的轻松支持,整个疾病轨迹都在寻求,在情感支持下实现个性化护理,更清晰的信息,更快的反馈。
结论:胶质母细胞瘤患者及其近亲所面临的生活状况的变化是巨大的,并强调了在整个医疗保健过程中提供综合护理的重要性。包括专科神经肿瘤护理,市政支持,和姑息治疗。对患者和亲属的个性化支持可以在生活混乱的情况下增强安全感。
OBJECTIVE: The aim of this study was to investigate the experiences of living with glioblastoma from the perspective of patients themselves as well as their closest
relatives, focusing on the changes in the life situation and the need for support.
METHODS: Twenty-two semi-structured interviews were conducted with 12 patients (mean age 61 years, 7 male, 5 female) and 10
relatives (mean age 56 years, 3 male, 7 female). The
relatives comprised of partners (n = 7), child (n = 1), sister (n = 1), or friend (n = 1). Questions focused on changes in the life situation and support needed to face these changes. Data was analyzed using inductive qualitative content analysis (QCA).
RESULTS: Living with glioblastoma dramatically changes the lives of both patients and
relatives. Cognitive symptoms (e.g., speech and memory disturbances), deterioration of physical function (e.g., paresis), and psychological function (e.g., behavioral changes, anxiety) can lead to impaired family dynamics, social isolation, and fear of the future. Support from other family members, friends, and healthcare professionals is crucial. Timely, tangible, and easily available support from the healthcare system the entire disease trajectory is sought after, enabling individualized care with emotional support, clearer information, and faster feedback.
CONCLUSIONS: The changes in life situations faced by patients with glioblastoma and their closest relatives are dramatic and underline the importance of providing integrated care throughout the entire healthcare continuum, encompassing specialist neuro-oncological care, municipal support, and palliative care. Individualized support for both patients and
relatives can enhance the sense of safety amid the chaos in their life situation.