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; Andrea Glässel

doi:10.3390/ijerph20043187

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

Int J Environ Res Public Health. 2023 Feb 11;20(4):3187. doi: 10.3390/ijerph20043187.

Authors

Beatrix Göcking¹, Nikola Biller-Andorno¹, Giovanna Brandi², Sophie Gloeckler¹, Andrea Glässel^{1

3}

Affiliations

¹ Institute of Biomedical Ethics and History of Medicine, University of Zurich, Winterthurerstrasse 30, CH-8006 Zurich, Switzerland.
² Institute of Intensive Care Medicine, University Hospital Zurich, Rämistrasse 100, CH-8091 Zurich, Switzerland.
³ Department of Health Sciences, Institute of Public Health, Zurich University of Applied Sciences, Katharina-Sulzer-Platz 9, CH-8401 Winterthur, Switzerland.

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: DIPEx; aneurysmal subarachnoid hemorrhage (aSAH); brain damage; decision-making; individual experiences; narratives; qualitative research; semi-structured interviews; thematical analysis.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Clinical Decision-Making
Humans
Pilot Projects
Religion
Spirituality
Subarachnoid Hemorrhage*

Grants and funding

This research received funding through the “Mind the Patient” Lab of the Digital Society Initiative of the University of Zurich and the Digital Health Design Living Lab sponsored by the Digitalization Initiative of the Canton of Zurich.