title: Exploring caregivers' knowledge of and receptivity toward novel diagnostic tests and treatments for persons with post-traumatic disorders of consciousness.
abstract: 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.
authors.affiliation: JFK-Johnson Rehabilitation Institute and the New Jersey Neuroscience Institute, JFK Medical Center, Edison, NJ, USA.|Department of Psychology, University of Victoria, Victoria, BC, Canada.
authors.forename: Colette M
authors.initials: CM
authors.lastname: Smart
authors.affiliation: JFK-Johnson Rehabilitation Institute and the New Jersey Neuroscience Institute, JFK Medical Center, Edison, NJ, USA.|Department of Physical Medicine & Rehabilitation, Spaulding Rehabilitation Hospital, Boston, MA, USA.
authors.forename: Joseph T
authors.initials: JT
authors.lastname: Giacino
mesh_terms: D000328:Adult; D020208:Brain Injury, Chronic / Q000150:complications / Q000175:diagnosis / Q000523:psychology / Q000534:rehabilitation*; D017028:Caregivers / Q000193:education / Q000523:psychology*; D002986:Clinical Trials as Topic; D003244:Consciousness Disorders / Q000175:diagnosis / Q000209:etiology / Q000523:psychology / Q000534:rehabilitation*; D003657:Decision Making; D005190:Family; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged
keywords: Disorders of consciousness; caregivers; minimally conscious state; qualitative; traumatic brain injury; vegetative state