Family caregivers’ sense-making of the results of functional neurodiagnostics for patients with Prolonged Disorders of Consciousness

Damian Cruse*, Kotryna Ragazinskaite, Amy Chinner, Corinne Bareham, Neil Roberts, Ruth Banner, Srivas Chennu, Darrelle Villa

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

71 Downloads (Pure)

Abstract

Functional neuroimaging and electrophysiological assessments can identify evidence of residual consciousness and cognition in patients with prolonged disorders of consciousness (PDOC) who are otherwise behaviourally unresponsive. These functional neurodiagnostics are increasingly available in clinical settings and are recommended by international clinical guidelines to reduce diagnostic and prognostic uncertainty, and thereby assist family caregivers in their best-interests decision-making. Nevertheless, little is known about how family caregivers make sense of the results of these state-of-the-art functional neurodiagnostics. By applying Interpretative Phenomenological Analysis (IPA) to interviews with family caregivers of patients with diagnoses of PDOC who had received a functional neurodiagnostic assessment, we identify three primary themes of sense-making: The special significance of “brain scans”; A dynamic sense-making process; Holding on to hope and holding on to the person. These themes highlight the challenges of helping family caregivers to balance the relative importance of functional neurodiagnostic results with other clinical assessments and identify an ability of family caregivers to hold a contradiction in which they hope for recovery but simultaneously express a rational understanding of evidence to the contrary. We offer several recommendations for the ways in which family caregivers can be better supported to make sense of the results of functional neurodiagnostics.
Original languageEnglish
Article number2299448
Number of pages22
JournalNeuropsychological Rehabilitation
Early online date17 Jan 2024
DOIs
Publication statusE-pub ahead of print - 17 Jan 2024

Bibliographical note

Funding:
This study was funded by a New Investigator Research Grant from the UK’s Medical Research Council to Damian Cruse (reference: MR/P013228/1) and by Birmingham Community Healthcare NHS Foundation Trust Research and Innovation.

Keywords

  • Disorders of consciousness
  • Neurodiagnostics
  • Disclosure
  • Sense-making
  • Interpretative phenomenological analysis

Fingerprint

Dive into the research topics of 'Family caregivers’ sense-making of the results of functional neurodiagnostics for patients with Prolonged Disorders of Consciousness'. Together they form a unique fingerprint.

Cite this