Exploring caregivers’ knowledge of and receptivity toward novel diagnostic tests and treatments for persons with post-traumatic disorders of consciousness
Affiliations: [a] JFK-Johnson Rehabilitation Institute and the New Jersey Neuroscience Institute, JFK Medical Center, Edison, NJ, USA | [b] Department of Psychology, University of Victoria, Victoria, BC, Canada | [c] Department of Physical Medicine & Rehabilitation, Spaulding Rehabilitation Hospital, Boston, MA, USA
Correspondence:
[*]
Address for correspondence: Colette M. Smart, Ph.D., Department of Psychology, P.O. Box 1700 STN CSC, University of Victoria, Victoria, BC, Canada V8W 2Y2. Tel.: +1 250 853 3997; Fax: +1 250 721 8929; [email protected]
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.
