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In our project, we listen closely to the stories of patients and loved ones who have experience with various kinds of brain damage, such as ischemic and hemorrhagic stroke, meningism, hypoxic brain damage after resuscitation, and drowning. Those interviewed tell us about their everyday lives, the care they received, and insights they’ve gained. Many offer suggestions for how formal and informal care could be improved.
Living with brain damage can affect individuals and their loved ones in various ways. The challenges faced vary depending on the condition and can include sudden loss of unconsciousness, ICU treatment, long stay in rehabilitation, physical disability, mental disability, and psychological distress as well as financial concerns due to job loss and the possible necessity of long-term care. Sometimes those affected give up hobbies or need to find a new rhythm of life while others gradually regain their everyday habits.
Non-traumatic brain damage is often characterized by the distressing experience of a sudden loss of consciousness and the challenge of surviving uncertainties. Those affected often navigate everything from personality changes to complex medical treatment decisions making. Given that patient experiences are still under-investigated and characterized by specific individual circumstances, the DIPEx approach aims to capture the complexity and breadth of the challenges faced by those experiencing brain damage and by their loved ones while also identifying sources of support and empowerment. Our “patients as experts” approach, with its open question and narrative elements, ensure interview partners have enough space to raise issues they deem important, including messages to healthcare providers or politicians. This way, we ensure we gather comprehensive, firsthand insights into individuals’ experiences, including new and unexpected findings that might otherwise be left unnoticed.
To broaden the insights of our interview study, we intend to work with patient organizations, patient representatives, and clinicians to define key issues around decision-making, access to health and social care services, and perceived psychological and economic effects. We engage health professionals working with this patient group as well.
We will discuss our findings with clinicians, ethicists, informatics, and patient organizations and work toward recommendations for decision-making aids specific to neurocritical care. The findings will also work towards recommendations for health care professionals and policymakers so they can continue improving everyday life and care for people with brain damage.
Digitalization Initiative of the Zurich Higher Education Institutions (DIZH) DHD-Living Lab
Göcking, B.; Biller-Andorno, N.; Brandi, G.; Gloeckler, S.; Glässel, A. 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, 20, 3187. https://doi.org/10.3390/ijerph20043187
