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


Göcking, Beatrix; Biller-Andorno, Nikola; Brandi, Giovanna; Gloeckler, Sophie; Glässel, Andrea (2023). Aneurysmal Subarachnoid Hemorrhage and Clinical Decision-Making: A Qualitative Pilot Study Exploring Perspectives of Those Directly Affected, Their Next of Kin, and Treating Clinicians. International Journal of Environmental Research and Public Health, 20(4):3187.

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.

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.

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Item Type:Journal Article, refereed, original work
Communities & Collections:04 Faculty of Medicine > Institute of Biomedical Ethics and History of Medicine
04 Faculty of Medicine > University Hospital Zurich > Institute of Intensive Care Medicine
Dewey Decimal Classification:610 Medicine & health
Scopus Subject Areas:Physical Sciences > Pollution
Health Sciences > Public Health, Environmental and Occupational Health
Physical Sciences > Health, Toxicology and Mutagenesis
Uncontrolled Keywords:Health, Toxicology and Mutagenesis, Public Health, Environmental and Occupational Health
Language:English
Date:11 February 2023
Deposited On:22 Mar 2023 14:38
Last Modified:28 Mar 2024 04:43
Publisher:MDPI Publishing
ISSN:1660-4601
OA Status:Gold
Free access at:PubMed ID. An embargo period may apply.
Publisher DOI:https://doi.org/10.3390/ijerph20043187
PubMed ID:36833886
Project Information:
  • : Funder“Mind the Patient” Lab of the Digital Society Initiative of the University of Zurich
  • : Grant ID
  • : Project Title
  • : FunderDigitalization Initiative of the Canton of Zurich
  • : Grant ID
  • : Project Title
  • Content: Published Version
  • Language: English
  • Licence: Creative Commons: Attribution 4.0 International (CC BY 4.0)