Talking About: self-determination and intensive care A Qualitative Study of Patient Experiences Development of DIPEx module: CMI


Experiencing a stay on intensive care unit (ICU) is not only challenging but associated with a complex process of decision making. For patients to experience ICU is often life-changing. One must always be aware that ICU is perceived individually and might as well differ between critical ill patients.  So how are the individual perceptions of a patient during critical illness? Thinking about the importance of self-determination in a situation of helplessness? Intensive care experiences include in addition to helplessness pain, nightmares and often hallucinations. In this study we aim to present how patients experience their time on the intensive care unit and how they have handled this experience. Constructing the interviews we will aim the focus on self-determination.
It is important for physicians, therapists and caregivers to know about the experiences and after-effects. This knowledge will be helpful in assisting future decision-making processes and for students and scientists to understand the patients’ perspective on intensive care.


Intensive care, self-determination, autonomy, DIPEx module, narrative research, patient`s perspective,



DIPEx international Health Experience Research Group (HERG), University Oxford, (UK) School of Health Professions, Zurich University of Applied Sciences Winterthur


Käthe-Zingg-Schwichtenberg Fond SAMW

Project duration

2019 - 2021


The Swiss Database of Individual Patient Experiences provides a systematic and methodologically collection of individual interviews about real-life experiences with health issues as multiple sclerosis. The project is part of the international DIPEx network, led by UK ( DIPEx works with a well-established and rigorous qualitative research methodology developed by the University of Oxford in 2000, which is documented in the Health Experience Research Group (HERG) manual. This qualitative study is based on narrative and semi-structured interviews. Video- and/or audio-or text sequences will be presented online.


Aims of the study and the module of Swiss DIPEx database are:

  • to develop a comprehensive understanding of patients experiences on intensive care;
  • to focus on self-determination and the possibility of loss in critical ill patients;
  • to make these experiences accessible to other people /family/proxies who had or will have the experiences of intensive care by using the online platform

Expected outcomes

Video-, and or audio-, and or text sequences from patients/clients perspective on topics regarding health and illness narratives.