Coping with an awake brain tumour resection in patients and their primary contacts: a qualitative study

Abstract

Abstract Background The diagnosis and awake removal of a brain tumour 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 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 21 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 procedure of awake craniotomy. In general, participants tended to rely on their pre-existing ways of coping. Situation specific coping mostly referred to perceiving control, and related to that, trust in the medical team. Conclusion Patients with a brain tumour 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.