Smart Colette M, Giacino Joseph T
JFK-Johnson Rehabilitation Institute and the New Jersey Neuroscience Institute, JFK Medical Center, Edison, NJ, USA.
Department of Psychology, University of Victoria, Victoria, BC, Canada.
NeuroRehabilitation. 2015;37(1):117-30. doi: 10.3233/NRE-151244.
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).
To gather information regarding the beliefs and opinions of caregivers regarding NTT for DOC.
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.
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.
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.
关于创伤后意识障碍（DOC）患者的照料者如何进行医疗决策，目前可获取的信息很少。然而，要建立基于证据的护理标准，照料者是否愿意让其家庭成员参与新型检测和治疗（NTT）的临床试验是关键。
收集照料者对DOC的NTT的信念和观点的信息。
通过焦点小组对N = 17名创伤后DOC患者的照料者进行探索性定性数据收集，这些患者处于损伤恢复的急性期（N = 7）和亚急性期（N = 10）。补充关于DOC知识的调查数据。
虽然对照料者对NTT的态度总体上是积极的，但出现了两个影响其参与NTT意愿的主要主题：患者和照料者特定因素，以及获取/使用信息以指导决策。虽然调查数据表明对照料者对NTT缺乏了解，但定性数据显示，这更好地解释为知识标准不同，即轶事信息与经验信息。
目前的研究结果可为医疗服务提供者和照料者之间关于医疗决策的讨论提供支持，并就如何提高照料者愿意让其家庭成员参与NTT临床试验的可能性提出建议。
