Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Box 100, 40530, Gothenburg, SE, Sweden.
Department of Neurosurgery, Sahlgrenska University Hospital, Gothenburg, Sweden.
Support Care Cancer. 2024 Aug 21;32(9):599. doi: 10.1007/s00520-024-08801-y.
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.
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).
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.
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.
本研究旨在从患者自身以及其最亲近的亲属的角度出发，调查他们在患有胶质母细胞瘤后的生活体验，重点关注生活状况的变化和对支持的需求。
对 12 名患者（平均年龄 61 岁，7 名男性，5 名女性）和 10 名亲属（平均年龄 56 岁，3 名男性，7 名女性）进行了 22 次半结构化访谈。这些亲属包括伴侣（n=7）、孩子（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。使用归纳定性内容分析（QCA）对数据进行分析。
患有胶质母细胞瘤会极大地改变患者和亲属的生活。认知症状（如言语和记忆障碍）、身体功能恶化（如瘫痪）和心理功能（如行为改变、焦虑）可导致家庭动态受损、社交孤立和对未来的恐惧。来自其他家庭成员、朋友和医疗保健专业人员的支持至关重要。在整个疾病过程中，患者及其最亲近的亲属都渴望获得及时、有形且易于获得的医疗系统支持，以实现个体化的关怀，包括情感支持、更清晰的信息和更快的反馈。
胶质母细胞瘤患者及其最亲近的亲属所面临的生活状况的变化是巨大的，这突显了在整个医疗保健连续体中提供综合关怀的重要性，涵盖了神经肿瘤专科护理、市政支持和姑息治疗。为患者和亲属提供个性化的支持可以增强他们在生活混乱中的安全感。
