Narrating hope among relatives to patients with disorders of consciousness
Year: 2025
Type: article
Abstract: Relatives of patients with severe acquired brain injury (sABI) navigate complex emotional and medical landscapes as they balance the realities of prognosis with the desire for recovery. Drawing on ethnographic fieldwork in Danish neurorehabilitation units, this study explores how relatives create and manage hope amid medical uncertainty. Inspired by Hirokazu Miyazaki’s concept of hope as a method, we analyze how hope functions as a relational and temporal practice that links past, present, and future. Relatives’ narratives and engagement with healthcare professionals shape hope in ways that both affirm and challenge biomedical understandings. Through storytelling about the patients’ lives, relatives convey relational knowledge of the patient, which may affect the clinical assessment. Hope becomes a dynamic, intersubjective process that enables relatives to sustain connections with patients despite uncertain outcomes. While healthcare professionals attempt to instill "realistic hope," relatives may resist such framing, maintaining hope in ways that extend beyond medical prognosis. This study contributes to the understanding of hope by highlighting how hope operates as an intersubjective and future-oriented practice that helps relatives reconcile loss while sustaining meaningful relationships. • What this study adds: • Families use hope to connect past, present, and future after severe brain injury • Hope enables relatives to manage uncertainty and sustain ties with patients • Biomedical efforts to regulate hope clash with families’ complex expectations • Supporting families requires valuing both emotional and clinical needs
Source: Social Science & Medicine
Institutions: Aarhus University, Regionshospitalet Silkeborg
Language: English
Subfield: Epidemiology
Field: Medicine
Domain: Health Sciences
Open Access status: hybrid
Estimated APC paid: $3,800
Awards: G1817239739, G6113996427
OpenAlex ID: W4416265042