Perspectives on consciousness in patients with disorders of consciousness from brain injury: group concept mapping study across clinic, research, and families

BACKGROUND: An effective healthcare system depends on clinic, research, and patient/relatives interactions. Such interactions may at their core be challenged by misalignments of concepts and the practices that constitute them. The concept of consciousness and what is experienced and understood as signs of consciousness in patients with severe acquired brain injury is one of these potential areas of misalignment. Different perspectives and experiences of consciousness are challenging the delivery of care and the high-stake decision-making process on the potential withdrawal of treatment. The enhanced uncertainties call for reflections on how key stakeholders perceive and identify consciousness in current clinical encounters and practice. METHODS: The study empirically explores the actual experiences and conceptions of consciousness concerning patients with disorders of consciousness (DoC) from the perspectives of researchers, health professionals, and relatives of patients, to understand the challenges of the diversity of understandings of consciousness. Engaging the stakeholders by employing Group Concept Mapping methodology, the study developed a situated conceptual map, which reflects nuances and the importance of perspectives on and signs of consciousness. RESULTS: Twenty-seven participants contributed to the generation of ideas, 14 took part in the structuring of statements and 10 took part in the validation meeting to interpret the cluster rating map. A total of 85 unique statements were identified and organized into six clusters: (1) Presence, (2) Intentional Activity, (3) Experience of self, (4) Participation in Social Interaction, (5) (Repeated) Response, and (6) Unspecific Reaction. The conceptual mapping demonstrates an extensive overlap in perspectives on consciousness among participants, prioritizing signs that are observable at the bedside. CONCLUSIONS: The study provides a first step toward a future framework for the difficult process of decision-making concerning a segment of patients with DoC. The study highlights the importance of repeatable signs of consciousness observed at the bedside and the patient’s ability to participate in social interactions, while also considering the importance of non-clinically observable signs of consciousness. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12913-023-09438-z.