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Narrating hope among relatives to patients with disorders of consciousness

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  • Boelsbjerg, Hanne Bess
  • Blond, Niklas
  • Høybye, Mette Terp

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.

Suggested Citation

  • Boelsbjerg, Hanne Bess & Blond, Niklas & Høybye, Mette Terp, 2026. "Narrating hope among relatives to patients with disorders of consciousness," Social Science & Medicine, Elsevier, vol. 389(C).
    • Handle: RePEc:eee:socmed:v:389:y:2026:i:c:s0277953625011141
    DOI: 10.1016/j.socscimed.2025.118783
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    References listed on IDEAS

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    1. Olson, Rebecca E. & Smith, Alexandra & Good, Phillip & Neate, Emily & Hughes, Cody & Hardy, Janet, 2021. "Emotionally reflexive labour in end-of-life communication," Social Science & Medicine, Elsevier, vol. 291(C).
    2. Ezzy, Douglas, 2000. "Illness narratives: time, hope and HIV," Social Science & Medicine, Elsevier, vol. 50(5), pages 605-617, March.
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