Aneurysmal Subarachnoid Hemorrhage and Clinical Decision-Making: A Qualitative Pilot Study Exploring Perspectives of Those Directly Affected, Their Next of Kin, and Treating Clinicians

Beatrix Göcking, Nikola Biller-Andorno, Giovanna Brandi, Sophie Gloeckler and Andrea Glässel ()
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Beatrix Göcking: Institute of Biomedical Ethics and History of Medicine, University of Zurich, Winterthurerstrasse 30, CH-8006 Zurich, Switzerland
Nikola Biller-Andorno: Institute of Biomedical Ethics and History of Medicine, University of Zurich, Winterthurerstrasse 30, CH-8006 Zurich, Switzerland
Giovanna Brandi: Institute of Intensive Care Medicine, University Hospital Zurich, Rämistrasse 100, CH-8091 Zurich, Switzerland
Sophie Gloeckler: Institute of Biomedical Ethics and History of Medicine, University of Zurich, Winterthurerstrasse 30, CH-8006 Zurich, Switzerland
Andrea Glässel: Institute of Biomedical Ethics and History of Medicine, University of Zurich, Winterthurerstrasse 30, CH-8006 Zurich, Switzerland

IJERPH, 2023, vol. 20, issue 4, 1-26

Abstract: Background: Exploring the experience and impact of aneurysmal subarachnoid hemorrhage (aSAH) from three perspectives, that of those directly affected (AFs), their next of kin (NoK), and treating clinicians, is a way to support and empower others to make informed medical decisions. Methods: In a Swiss neurosurgical intensive care unit (ICU), eleven semi-structured interviews were conducted as part of a Database of Individual Patient Experiences (DIPEx) pilot project and thematically analyzed. Interviews were held with two clinicians, five people experiencing aSAH, and four NoK 14–21 months after the bleeding event. Results: Qualitative analysis revealed five main themes from the perspective of clinicians: emergency care, diagnosis and treatment, outcomes, everyday life in the ICU, and decision-making; seven main themes were identified for AFs and NoK: the experience of the aSAH, diagnosis and treatment, outcomes, impact on loved ones, identity, faith, religion and spirituality, and decision-making. Perspectives on decision-making were compared, and, whereas clinicians tended to focus their attention on determining treatment, AFs and NoK valued participation in shared decision-making processes. Conclusions: Overall, aSAH was perceived as a life-threatening event with various challenges depending on severity. The results suggest the need for tools that aid decision-making and better prepare AFs and NoK using accessible means and at an early stage.

Keywords: aneurysmal subarachnoid hemorrhage (aSAH); brain damage; semi-structured interviews; narratives; individual experiences; thematical analysis; qualitative research; decision-making; DIPEx (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2023
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