Exploring caregivers' knowledge of and receptivity toward novel diagnostic tests and treatments for persons with post-traumatic disorders of consciousness

NeuroRehabilitation. 2015;37(1):117-30. doi: 10.3233/NRE-151244.


Background: A paucity of information is available regarding how caregivers of persons with post-traumatic disorders of consciousness (DOC) approach medical decision-making. Yet for evidence-based standards of care to be established, the onus is on caregivers' willingness to enroll their family members in clinical trials of novel tests and treatments (NTT).

Objective: To gather information regarding the beliefs and opinions of caregivers regarding NTT for DOC.

Methods: Exploratory qualitative data via focus groups from N = 17 caregivers of persons in post-traumatic DOC at both the acute (N = 7) and subacute (N = 10) phases of injury recovery. Supplemental survey data about knowledge of DOC.

Results: While attitudes toward NTT were generally favorable, two main themes emerged that influenced willingness to pursue NTT: patient and caregiver-specific factors, and the acquisition/use of information to guide decision-making. While survey data suggested a lack of knowledge about NTT, qualitative data revealed that this was better explained by different standards for knowledge, i.e., anecdotal versus empirical information.

Conclusions: Current findings could support discussion between healthcare providers and caregivers regarding medical decision-making as well as suggestions for how to increase the likelihood of caregivers being willing to enroll their family members in clinical trials of NTT.

Keywords: Disorders of consciousness; caregivers; minimally conscious state; qualitative; traumatic brain injury; vegetative state.

Publication types

  • Research Support, U.S. Gov't, Non-P.H.S.

MeSH terms

  • Adult
  • Brain Injury, Chronic / complications
  • Brain Injury, Chronic / diagnosis
  • Brain Injury, Chronic / psychology
  • Brain Injury, Chronic / rehabilitation*
  • Caregivers / education
  • Caregivers / psychology*
  • Clinical Trials as Topic
  • Consciousness Disorders / diagnosis
  • Consciousness Disorders / etiology
  • Consciousness Disorders / psychology
  • Consciousness Disorders / rehabilitation*
  • Decision Making
  • Family
  • Female
  • Health Knowledge, Attitudes, Practice*
  • Humans
  • Male
  • Middle Aged