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

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

Author information

1
JFK-Johnson Rehabilitation Institute and the New Jersey Neuroscience Institute, JFK Medical Center, Edison, NJ, USA.
2
Department of Psychology, University of Victoria, Victoria, BC, Canada.
3
Department of Physical Medicine & Rehabilitation, Spaulding Rehabilitation Hospital, Boston, MA, USA.

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.

KEYWORDS:

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

PMID:
26409697
DOI:
10.3233/NRE-151244
[Indexed for MEDLINE]

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