Conceptualizations of consciousness and continuation of care among family members and health professionals caring for patients in a minimally conscious state.

BACKGROUND: The American Academy of Neurology recently emphasized the importance of communicating with patients' families to better reflect patient values in clinical care. However, little is known about how decisions about continuing rehabilitative care made by family caregivers and healthcare providers working with minimally conscious patients are informed by conceptualizations of consciousness and moral status. METHODS: We explored these issues in interviews with 18 family caregivers and 20 healthcare professionals caring for minimally conscious patients. Data were analyzed using thematic content analysis. RESULTS: Results suggest that family members and healthcare professionals share similar views of what consciousness is ("being there") and what it is indicated by ("a look in the eyes," and/or an "ability to do"/agency). They also share a belief that the presence (or "level") of consciousness does not determine whether rehabilitative care should be discontinued. Rather, it should be determined by considerations of suffering and well-being. Providers were more likely to view suffering as rationale for discontinuation of care, while family members viewed suffering as an indicator of and motivator for potential recovery. CONCLUSION: Findings can help optimize family-provider communications about minimally conscious patients by acknowledging shared assumptions and interpretations of consciousness, as well as key areas where perspectives diverge.Implications for rehabilitationFamily and professional caregivers' interpretations of consciousness and suffering are implicated in decisions about continuing rehabilitation for minimally conscious patients.Family members and healthcare providers both rely to some extent on non-observable evidence to evaluate consciousness, which may be an adaptive and philanthropic response to clinical uncertainty.Acknowledging shared assumptions and interpretations of consciousness, as well as diverging perspectives, can help to optimize family-provider communications.

Head-to-Head Comparison of Social Network Assessments in Stroke Survivors.

BACKGROUND AND PURPOSE: Social networks influence human health and disease through direct biological and indirect psychosocial mechanisms. They have particular importance in neurologic disease because of support, information, and healthy behavior adoption that circulate in networks. Investigations into social networks as determinants of disease risk and health outcomes have historically relied on summary indices of social support, such as the Lubben Social Network Scale-Revised (LSNS-R) or the Stroke Social Network Scale (SSNS). We compared these 2 survey tools to personal network (PERSNET) mapping tool, a novel social network survey that facilitates detailed mapping of social network structure, extraction of quantitative network structural parameters, and characterization of the demographic and health parameters of each network member. METHODS: In a cohort of inpatient and outpatient stroke survivors, we administered LSNS-R, SSNS, and PERSNET in a randomized order to each patient. We used logistic regression to generate correlation matrices between LSNS-R scores, SSNS scores, and PERSNET's network structure (eg, size and density) and composition metrics (eg, percent kin in network). We also examined the relationship between LSNS-R-derived risk of social isolation with PERSNET-derived network size. RESULTS: We analyzed survey responses for 67 participants and found a significant correlation between LSNS-R, SSNS, and PERSNET-derived indices of network structure. We found no correlation between LSNS-R, SSNS, and PERSNET-derived metrics of network composition. Personal network mapping tool structural and compositional variables were also internally correlated. Social isolation defined by LSNS-R corresponded to a network size of <5. CONCLUSIONS: Personal network mapping tool is a valid index of social network structure, with a significant correlation to validated indices of perceived social support. Personal network mapping tool also captures a novel range of health behavioral data that have not been well characterized by previous network surveys. Therefore, PERSNET offers a comprehensive social network assessment with visualization capabilities that quantifies the social environment in a valid and unique manner.