Narrating hope among relatives to patients with disorders of consciousness

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.

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Publication Details

Journal
Social Science & Medicine
Published
2025-11-15
DOI
https://doi.org/10.1016/j.socscimed.2025.118783
Primary Topic
Optimism, Hope, and Well-being
Type
article
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article

Narrating hope among relatives to patients with disorders of consciousness

Mette Terp Høybye, Niklas Blond, Hanne Bess Boelsbjerg
Social Science & Medicine
Optimism, Hope, and Well-being
article

Narrating hope among relatives to patients with disorders of consciousness

Mette Terp Høybye, Niklas Blond, Hanne Bess Boelsbjerg
article en

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.

Social Science & MedicineVol. 389
Aarhus University (DK), Regionshospitalet Silkeborg (DK)
Openalex Percentile: Top 61%
Optimism, Hope, and Well-being
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