Living with glioblastoma — the need for integrated support based on experiences of chaos, loss of autonomy, and isolation in both patients and their relatives

Abstract

Purpose 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. Conclusion 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.