P12.12.a “Then My Life Turned Upside Down in an Instant” People’s Experiences of Living With Brain Tumor - A Qualitative Interview Study

BACKGROUND Lower-grade gliomas (LrGG) are slow-growing brain tumors typically discovered in patients around the age of 40. Previous research shows impaired quality of life affecting cognitive, emotional, and social function, as well as mental fatigue. There is insufficient knowledge about how patients experience changes in their life situation when living with the disease for a long time. We aimed to explore patients’ experiences of everyday life while living with LrGG from a long-term perspective. MATERIAL AND METHODS We conducted a qualitative interview study using a semi-structured interview guide. A total of 29 interviews were carried out. For the purpose of this master’s thesis, a strategic selection was made to limit the material to a manageable scope. Accordingly, six interviews were analysed, all involving patients who had lived with the disease for >10 years. Inductive qualitative content analysis was used to analyse the manifest content. RESULTS Three women and three men, aged 35 to 65 years, participated. In the preliminary analysis, three categories and ten subcategories emerged. The disease affected the participantsꞋ life situations in several ways, and they found various approaches to manage the consequences. The influence of healthcare support on participantsꞋ life situations was highlighted through both positive and negative experiences. Living with a slow-growing brain tumor had consequences in everyday life. Cognitive impairments, particularly memory loss and mental fatigue, as well as physical limitations, affected everyday activities. Over time, the participants described a gradual adaptation process, wherein the disease became a part of their daily routine. However, it was emotionally challenging to cope with limitations that served as a constant reminder of the disease and the threat of relapse. Relationships with family and friends were affected. To manage cognitive impairments and the psychosocial impact of the disease, patients employed both mental and practical strategies. Planning for the future became more difficult, and it was described as increasingly important to make the best out of life. Support from healthcare was crucial, but there were areas with room for improvement. CONCLUSION Living with a slow-growing brain tumor had consequences for everyday life in relation to psycho-social, cognitive and physical functioning, as well as mental fatigue. The consequences served as reminders of the disease. Ways to manage this were by using strategies, both mental and practical. This can serve as a foundation for more tailored care and improved team interventions for these people.