Negotiating uncertainty and responsibility after a vestibular schwannoma diagnosis: a qualitative study of meaning-making and surgical decision-making

BACKGROUND: A diagnosis of vestibular schwannoma (VS) confronts patients with complex treatment decisions under conditions of uncertainty. While previous research has focused on treatment outcomes, symptom trajectories, and predictors of treatment choice, less is known about how patients psychologically process the diagnosis and construct meaning before surgery. This study explored how patients experience uncertainty, regain agency, and negotiate responsibility during the preoperative period. METHODS: We conducted semi-structured interviews with twelve patients who underwent surgical resection of a VS within the previous five years. Interviews explored emotional, cognitive, and relational experiences following diagnosis and during treatment decision-making. Data were analyzed using qualitative content analysis. RESULTS: Four interconnected themes described a process of reconstructing certainty and agency after diagnosis: (1) Diagnosis as biographical disruption, as patients experienced VS as a sudden event challenging their sense of normality, identity, and future expectations; (2) Meaning-making as an attempt to regain control, involving information-seeking, peer exchange, and reinterpretation of previous experiences; (3) Healthcare interactions as regulators of uncertainty, with communication quality, empathy, and consistency shaping confidence and emotional stability; and (4) Surgical decision-making as emotional, relational, and moral work, requiring patients to negotiate fear, trust, responsibility, and the burden of irreversible choices. CONCLUSION: The preoperative experience of patients with VS extends beyond symptom burden and treatment selection. Patients engage in complex processes of meaning-making and uncertainty management before deciding on treatment. Patient-centered care should integrate clear information with empathetic communication and support patients in navigating the emotional and moral dimensions of decision-making.