Shared decision making in neurosurgical consultations: A qualitative study of patients’ and relatives’ experiences

Background: Glioblastomas are highly aggressive brain tumors and tumor recurrence is inevitable. At tumor recurrence, critical decisions about treatment and care have to be made, and in this process, patients and relatives require decision support. This study aimed to investigate how patients with glioblastoma and their relatives experienced the "Decision Helper" (DH) which is a paper-based decision aid designed to guide shared decision making in neurosurgical consultations. Methods: Semi-structured interviews were conducted with 14 patients and 15 close relatives immediately after the neurosurgical consultation. The interviews were analyzed using a reflexive thematic analysis approach. Results: The analysis generated three overlapping themes. Theme I, the DH's impact on decision certainty and decisional conflict, covered the participants' experiences of reduced uncertainty about the decision. Theme II, the DH's impact on information, encompassed the support the participants received regarding distinguishing between options and comprehending the clinicians' information. Theme III, the DH's impact on the consultation and relationship with the physician, focused on how the impact of the DH was realized through the structure of the consultation and increasing patient-centeredness. However, the impact of the DH depended on the physician's communication skills and their ability and willingness to use the DH during the consultation. Conclusion: Participants experienced that the DH enhanced their involvement and improved their understanding of the information provided by the neurosurgeons. It facilitated more precise comparisons among treatment options and made participants feel more confident in their decision. Clinicians need training in delivering decision support to patients and relatives.