P08.01.A FAMILY SUPPORT NEEDS IN GLIOBLASTOMA - FROM RELATIVES’ PERSPECTIVES

Abstract

Abstract BACKGROUND Glioblastoma is the most common and aggressive brain tumour in adults. In spite of standard treatment by surgery followed by radiation and chemotherapy, the average life expectancy is only 10-15 months. As such, glioblastoma affects the family situation and relatives around the patient need support. There is a lack of knowledge about their experiences of support during the illness. The aim of this study was to investigate support needs during the illness trajectory in glioblastoma from the relatives’ perspectives. MATERIAL AND METHODS In this study, 12 relatives (7 partners, 3 children, 1 sister, 1 friend) to patients with a histologically-confirmed diagnosis of IDH-wt glioblastoma since at least 2 months and age ≥ 18 years at the time of diagnosis, were interviewed individually based on a semi-structured interview guide. Interviews took place on one occasion by physical or digital meeting or via telephone, based on the participant's preferences. The interviews were audio recorded and transcribed verbatim. Data collection occurred from March 2022 until December 2022. The analysis using inductive qualitative content analysis is in progress. RESULTS Preliminary results show that relatives were mostly satisfied with the support from the health care. However, they lived in a very stressful situation and parts of the support could be better organized. It was important for them with clear and correct information regardless of the outcome. The waiting time before and after MRI, living in limbo with anxiety of what would be found, was particularly stressful and they desired processing with faster answers. Availability to the health care was an important factor and because of the difficult situation they preferred digital meetings instead of physical meetings. Further, they found it difficult to manage the contacts with different health care instances and thought it would be helpful with support to navigate them to correct instance. CONCLUSION The preliminary results indicate that support to the families should be more structured och focused on clearness, high availability and openness for the family’s needs, and guidance in the health care system.