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

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Study analyzed data from family caregivers of individuals with post-traumatic disorders of consciousness (DOC) regarding their knowledge of and attitudes toward novel tests and treatments (NTT). Data were gathered through focus groups conducted with 17 caregivers recruited from within one Traumatic Brain Injury Model System center; 7 were from the acute unit and 10 were from the subacute unit. Supplemental survey data explored their knowledge of DOC. While attitudes toward NTT were generally favorable, 2 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. Findings could facilitate the discussion between healthcare providers and caregivers regarding medical decision-making as well as provide 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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