Journal
NEUROREHABILITATION
Volume 37, Issue 1, Pages 117-130Publisher
IOS PRESS
DOI: 10.3233/NRE-151244
Keywords
Disorders of consciousness; minimally conscious state; vegetative state; traumatic brain injury; caregivers; qualitative
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Funding
- National Institute on Disability and Rehabilitation Research [H133A070030, H133A120085]
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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.
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