A computer-based education intervention to enhance surrogates' informed consent for genomics research.

BACKGROUND: Many research studies conducted today in critical care have a genomics component. Patients' surrogates asked to authorize participation in genomics research for a loved one in the intensive care unit may not be prepared to make informed decisions about a patient's participation in the research. OBJECTIVES: To examine the effectiveness of a new, computer-based education module on surrogates' understanding of the process of informed consent for genomics research. METHODS: A pilot study was conducted with visitors in the waiting rooms of 2 intensive care units in a Midwestern tertiary care medical center. Visitors were randomly assigned to the experimental (education module plus a sample genomics consent form; n = 65) or the control (sample genomics consent form only; n = 69) group. Participants later completed a test on informed genomics consent. RESULTS: Understanding the process of informed consent was greater (P = .001) in the experimental group than in the control group. Specifically, compared with the control group, the experimental group had a greater understanding of 8 of 13 elements of informed consent: intended benefits of research (P = .02), definition of surrogate consenter (P= .001), withdrawal from the study (P = .001), explanation of risk (P = .002), purpose of the institutional review board (P = .001), definition of substituted judgment (P = .03), compensation for harm (P = .001), and alternative treatments (P = .004). CONCLUSIONS: Computer-based education modules may be an important addition to conventional approaches for obtaining informed consent in the intensive care unit. Preparing patients' family members who may consider serving as surrogate consenters is critical to facilitating genomics research in critical care.

Mechanisms through which reciprocal filial values protect wellbeing of Chinese adult-child caregivers in the US.

In this study, we explored the role of reciprocal filial values in protecting the wellbeing of Chinese adult-child caregivers in the US. Using survey data obtained from 137 Chinese adult-child caregivers living in seven US cities, we tested a latent variable model using structural equation modeling. In this model, informed by role theory, social exchange theory and stress-coping theory, reciprocal filial values affect caregiver wellbeing in the face of caregiver role strain, both directly and indirectly through protective effects of role rewards and coping. In the final model, reciprocal filial values had both direct and indirect protective effects on caregivers' wellbeing, offering evidence to address culturally sensitive issues in family caregivers with similar filial values.