Coping with an awake brain tumor resection in patients and their primary contacts: A qualitative study

Background. The diagnosis and awake removal of a brain tumor is a major life event. A better understanding of the needs of this group of patients and their primary contacts in the perioperative trajectory can further improve care. Methods. Adult patients who underwent an awake craniotomy (AC) in the Erasmus MC, the Netherlands and their primary contacts were interviewed 1-2 weeks prior to surgery and 2-4 weeks after surgery. Semi-structured interviews on the impact of the diagnosis on their lives and coping mechanisms with the AC procedure were conducted. Interview transcripts were analyzed in accordance with the principles of grounded theory. Results. Twenty-one patients and 19 primary contacts were interviewed at least once during this period. Analyses and coding of the transcripts resulted in a conceptual model, distinguishing coping with the disease and coping with specific procedures of AC. In general, participants tended to rely on their pre-existing ways of coping. Situation- specific coping mostly refers to perceiving control, and related to that, trust in the medical team. Conclusions. Patients with a brain tumor and their primary contacts perceive coping with the AC procedure as a part of coping with the disease. Although the procedure may be perceived as stressful, at the same time it offers hope and prospect. In coping with the specifics of the AC procedure, we found that feeling in control and as an extension of that, trust in the AC team were key aspects.