Objectives This study explores surrogate decision-makers’ (SDMs) challenges making decisions related to the care of patients in critical care, to 1) characterize the SDM stress 2) identify personal, social, care-related factors influencing stress and 3) consider implications of findings to improving critical care practice. Methodology Semi-structured interviews were conducted with SDMs of critically ill patients receiving care in two tertiary care institutions. Transcripts were analyzed using a grounded theory approach. Domains explored were: stress characteristics, stress mitigators, coping strategies, social networks, SDM decision-making role, decision-making concordance, knowledge of patient's preferences, experience with provider team, SDM-provider communication, patient outcome certainty. Main Outcomes We interviewed 34 SDMs. Most were female and described long-term relationships with patients. SDMs described the strain of uncertain outcomes and decision-making without clear, consistent information from providers. Decision-making anxiety was buffered by SDMs’ active engagement of social networks, faith and access to clear communication from providers. Conclusion Stress is a very real factor influencing SDMs confidence and comfort making decisions. These findings suggest that stress can be minimized by improving communication between SDMs and medical providers. Nurses central role in ICU make them uniquely poised to spearhead interventions to improve provider-SDM communication and reduce SDM decision-making anxiety.

Summary Background Patient education forms a cornerstone of management of inflammatory bowel disease (IBD). The Internet has opened new avenues for information gathering. Aim To determine the relationship between different information sources and patient knowledge and anxiety in patients with IBD. Methods The use of information sources in patients with IBD was examined via questionnaire. Anxiety was assessed with the hospital anxiety and depression scale and disease‐related patient knowledge with the Crohn's and colitis knowledge score questionnaires. Associations between these outcomes and demographics, disease‐related factors, and use of different information sources were analysed using linear regression analysis. Results Of 307 patients (165 Crohn's disease, 142 ulcerative colitis) 60.6% were female. Participants used the hospital IBD team (82.3%), official leaflets (59.5%), and official websites (53.5%) most frequently in contrast to alternative health websites (9%). University education (P < 0.001), use of immunosuppressants (P = 0.025), Crohn's and Colitis UK membership (P = 0.001), frequent use of the hospital IBD team (P = 0.032), and frequent use of official information websites (P = 0.005) were associated with higher disease‐related patient knowledge. Female sex (P = 0.004), clinically active disease (P < 0.001), frequent use of general practitioners (P = 0.014), alternative health websites (homoeopathy, nutritionists, etc.) (P = 0.004) and random links (P = 0.016) were independently associated with higher anxiety. Conclusions Different patient information sources are associated with better knowledge or worse anxiety levels. Face‐to‐face education and written information materials remain the first line of patient education. Patients should be guided towards official information websites and warned about the association between the use of alternative health websites or random links and anxiety.

Detection of β-amyloid oligomers may someday become a useful clinical tool for determining injury severity and neurological outcomes in patients with TBI.

Objective : We undertook the current investigation to explore how the pressures of serving as a surrogate decision-maker (SDM) for an acutely ill family member infl uence attitudes regarding clinical investigation. Methods: We conducted a prospective study involving SDMs for critically ill patients cared for in the ICUs of two urban hospitals. Measurements included participation in focus groups designed to explore perceptions of ICU care and clinical research. Audiotapes were transcribed and analyzed to identify common patterns and themes using grounded theory. Demographic and clinical data were summarized using standard statistical methods. Results: Seventy-four SDMs (corresponding to 24% of eligible patients) participated. Most SDMs were women and described long-term relationships with the patients represented. SDMs described their role as "overwhelming," their emotions were accentuated by the fatigue of the ICU experience, and they relied on family members, social contacts, and religion as sources of support. Altruism was reported as a common motivation for potential study participation, a sentiment often strengthened by the critical illness episode. Although research was viewed as optional, some SDMs perceived invitation for research participation as tacit acknowledgment of therapeutic failure. SDMs expressed a preference for observational studies (perceived as low risk) over interventional designs (perceived as higher risk). Trust in the ICU team and the research enterprise seemed tightly linked. Conclusions: Despite signifi cant emotional duress, SDMs expressed interest in investigation and described multiple factors motivating participation. Consent processes that minimize the effects of anxiety may be one strategy to enhance recruitment.

about potential misuse of genetic data largely centered on misconduct, paternity, forensic applications, and insurance and employment discrimination. Although surrogate decision makers expressed that their loved ones would have interest in return of results and being recontacted for future use, these interests were secondary to confidentiality concerns. Conclusion:Respondents perceived genetic and nongenetic data as comparable. Informed consent processes that provide clear information regarding confidentiality protections, specimen handling, and parameters for future use may enhance enrollment. 2013:15(5):368-373 Genet Med