@article{ref1,
title="Exploring caregivers' knowledge of and receptivity toward novel diagnostic tests and treatments for persons with post-traumatic disorders of consciousness",
journal="NeuroRehabilitation",
year="2015",
author="Smart, Colette M. and Giacino, Joseph T.",
volume="37",
number="1",
pages="117-130",
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). <br><br>OBJECTIVE: To gather information regarding the beliefs and opinions of caregivers regarding NTT for DOC. <br><br>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. <br><br>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. <br><br>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.<p /> <p>Language: en</p>",
language="en",
issn="1053-8135",
doi="10.3233/NRE-151244",
url="http://dx.doi.org/10.3233/NRE-151244"
}