Systematic review and metasummary of attitudes toward research in emergency medical conditions

Emergency departments are challenging research settings, where truly informed consent can be difficult to obtain. A deeper understanding of emergency medical patients' opinions about research is needed. We conducted a systematic review and meta-summary of quantitative and qualitative studies on which values, attitudes, or beliefs of emergent medical research participants influence research participation. We included studies of adults that investigated opinions toward emergency medicine research participation. We excluded studies focused on the association between demographics or consent document features and participation and those focused on non-emergency research. In August 2011, we searched the following databases: MEDLINE, EMBASE, Google Scholar, Scirus, PsycINFO, AgeLine and Global Health. Titles, abstracts and then full manuscripts were independently evaluated by two reviewers. Disagreements were resolved by consensus and adjudicated by a third author. Studies were evaluated for bias using standardised scores. We report themes associated with participation or refusal. Our initial search produced over 1800 articles. A total of 44 articles were extracted for full-manuscript analysis, and 14 were retained based on our eligibility criteria. Among factors favouring participation, altruism and personal health benefit had the highest frequency. Mistrust of researchers, feeling like a 'guinea pig' and risk were leading factors favouring refusal. Many studies noted limitations of informed consent processes in emergent conditions. We conclude that highlighting the benefits to the participant and society, mitigating risk and increasing public trust may increase research participation in emergency medical research. New methods for conducting informed consent in such studies are needed.

Understanding the Context for Long-Term Care Planning.

Evolving family structure and economic conditions may affect individuals' ability and willingness to plan for future long-term care (LTC) needs. We applied life course constructs to analyze focus group data from a study of family decision making about LTC insurance. Participants described how past exposure to caregiving motivated them to engage in LTC planning; in contrast, child rearing discouraged LTC planning. Perceived institutional and economic instability drove individuals to regard financial LTC planning as either a wise precaution or another risk. Perceived economic instability also shaped opinions that adult children are ill-equipped to support parents' LTC. Despite concerns about viability of social insurance programs, some participants described strategies to maximize gains from them. Changing norms around aging and family roles also affected expectations of an active older age, innovative LTC options, and limitations to adult children's involvement. Understanding life course context can inform policy efforts to encourage LTC planning.