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Item A Participant-Centered Approach to Understanding Risks and Benefits of Participation in Research Informed by the Kidney Precision Medicine Project(Elsevier, 2022) Butler, Catherine R.; Appelbaum, Paul S.; Ascani, Heather; Aulisio, Mark; Campbell, Catherine E.; de Boer, Ian H.; Dighe, Ashveena L.; Hall, Daniel E.; Himmelfarb, Jonathan; Knight, Richard; Mehl, Karla; Murugan, Raghavan; Rosas, Sylvia E.; Sedor, John R.; O'Toole, John F.; Tuttle, Katherine R.; Waikar, Sushrut S.; Freeman, Michael; Kidney Precision Medicine Project; Medicine, School of MedicineAn understanding of the ethical underpinnings of human subjects research that involves some risk to participants without anticipated direct clinical benefit-such as the kidney biopsy procedure as part of the Kidney Precision Medicine Project (KPMP)-requires a critical examination of the risks as well as the diverse set of countervailing potential benefits to participants. This kind of deliberation has been foundational to the development and conduct of the KPMP. Herein, we use illustrative features of this research paradigm to develop a more comprehensive conceptualization of the types of benefits that may be important to research participants, including respecting pluralistic values, supporting the opportunity to act altruistically, and enhancing benefits to a participant's community. This approach may serve as a model to help researchers, ethicists, and regulators to identify opportunities to better respect and support participants in future research that entails some risk to these participants as well as to improve the quality of research for people with kidney disease.Item Abbreviated dignity therapy for adults with advanced-stage cancer and their family caregivers: Qualitative analysis of a pilot study(Cambridge University Press, 2019-06) Beck, Adrienne; Cottingham, Ann H.; Stutz, Patrick V.; Gruber, Rachel; Bernat, Jennifer K.; Helft, Paul R.; Wilhelm, Laura; Schmidt, Karen; Stout, Madison E.; Willard, Claire; Johns, Shelley A.; Medicine, School of MedicineObjective Dignity therapy (DT) is designed to address psychological and existential challenges that terminally ill individuals face. DT guides patients in developing a written legacy project in which they record and share important memories and messages with those they will leave behind. DT has been demonstrated to ease existential concerns for adults with advanced-stage cancer; however, lack of institutional resources limits wide implementation of DT in clinical practice. This study explores qualitative outcomes of an abbreviated, less resource-intensive version of DT among participants with advanced-stage cancer and their legacy project recipients. Method Qualitative methods were used to analyze postintervention interviews with 11 participants and their legacy recipients as well as the created legacy projects. Direct content analysis was used to assess feedback from the interviews about benefits, barriers, and recommendations regarding abbreviated DT. The legacy projects were coded for expression of core values. Result Findings suggest that abbreviated DT effectively promotes (1) self-expression, (2) connection with loved ones, (3) sense of purpose, and (4) continuity of self. Participants observed that leading the development of their legacy projects promoted independent reflection, autonomy, and opportunities for family interaction when reviewing and discussing the projects. Consistent with traditional DT, participants expressed “family” as the most common core value in their legacy projects. Expression of “autonomy” was also a notable finding. Significance of results Abbreviated DT reduces resource barriers to conducting traditional DT while promoting similar benefits for participants and recipients, making it a promising adaptation warranting further research. The importance that patients place on family and autonomy should be honored as much as possible by those caring for adults with advanced-stage cancer.Item Academic Freedom and University Autonomy: A comparative analysis of the Turkish higher education system(2011-03-10) Norris, Kristin E.The article provides an overview of the faculty profession in less developed countries including academic appointments and the tenure system, discusses issues related to academic freedom and autonomy of work, then discusses the influence of these factors in the Turkish higher education system.Item Adolescent Assent and Reconsent for Biobanking: Recent Developments and Emerging Ethical Issues(Frontiers Media, 2021-07-09) Kasperbauer, T. J.; Halverson, Colin; Medicine, School of MedicineResearch biobanks that enroll minors face important practical, ethical, and regulatory challenges in reconsenting participants when they reach the age of 18. Federal regulations governing research in the United States provide minimal guidance and allow for a range of practices, including waiving the requirement to obtain reconsent. Some commentators have argued that institutional review boards should indeed grant such waivers, given the low risks of biobank-based research and the impracticality of contacting all participants when they turn 18. There is also significant ethical debate about the age at which adolescents can make authentic, autonomous decisions regarding their research participation. This paper reviews these issues in detail, describes the current state of the ethical discussion, and outlines evidence-based policies for enrolling minors into research biobanks.Item The Best Laid Plans… Helping Teachers Foster Intrinsic Motivation in Their Students(2015) Walters, Nicholas; Ganci, AaronHigh school students suffer from a lack of intrinsic motivation to participate in class. In an attempt to combat this lack of motivation, educators often provide students with rewards for participation. However, self-determination theory—a theory of motivation— states that these external incentives contribute to students’ lack of intrinsic motivation.Item Effectiveness of Occupational Therapy Interventions to Promote Social Participation and Quality of Life in Older Adults: A Rapid Systematic Review(2021-05-05) Adams, Alexa; Horsford, Caitlin; Jones, Paige; Long, Ryane; Pflugradt, Dana; Chase, Anthony; Department of Occupational Therapy, School of Health and Human SciencesThis systematic review discusses the evidence of 24 studies to identify the effectiveness of various evidence-based interventions that could be utilized within the scope of occupational therapy (OT), as they aim to improve social participation and health related quality of life in adults over 60 years of age. Older adults often experience difficulty with social engagement, increasing their risk for social isolation which is correlated to decreases in health-related quality of life, functional mobility, as well as increased loneliness, cognitive declines, or other adverse physical and psychological effects. Social participation can facilitate increased health-related quality of life, mitigate loneliness, as well as slow cognitive decline and other adverse physical and psychological effects related to aging and late life transitions. Overall, this review found strong evidence for the effectiveness of physical activity interventions, moderate evidence for the effectiveness of emotional and personal based interventions, and mixed evidence for external support interventions that aim to improve social participation in older adults. Additional research should be conducted to further identify objective aspects (rather than typical subjective aspects) of evidence-based interventions that clinically correlate to increased health-related quality of life and well-being as related to social participation for therapeutic utilization within the domain of occupational therapy for older adults.Item Factor structure of the autonomy preference index in people with severe mental illness(Elsevier, 2015-08-30) Bonfils, Kelsey A.; Adams, Erin L.; Mueser, Kim T.; Wright-Berryman, Jennifer L.; Salyers, Michelle P.; Department of Psychology, School of SciencePeople vary in the amount of control they want to exercise over decisions about their healthcare. Given the importance of patient-centered care, accurate measurement of these autonomy preferences is critical. This study aimed to assess the factor structure of the Autonomy Preference Index (API), used widely in general healthcare, in individuals with severe mental illness. Data came from two studies of people with severe mental illness (N=293) who were receiving mental health and/or primary care/integrated care services. Autonomy preferences were assessed with the API regarding both psychiatric and primary care services. Confirmatory factor analysis was used to evaluate fit of the hypothesized two-factor structure of the API (decision-making autonomy and information-seeking autonomy). Results indicated the hypothesized structure for the API did not adequately fit the data for either psychiatric or primary care services. Three problematic items were dropped, resulting in adequate fit for both types of treatment. These results suggest that with relatively minor modifications the API has an acceptable factor structure when asking people with severe mental illness about their preferences to be involved in decision-making. The modified API has clinical and research utility for this population in the burgeoning field of autonomy in patient-centered healthcare.Item Monotherapy Anticoagulation to Expedite Home Treatment of Patients Diagnosed With Venous Thromboembolism in the Emergency Department: A Pragmatic Effectiveness Trial(American Heart Association, 2021) Kline, Jeffrey A.; Adler, David H.; Alanis, Naomi; Bledsoe, Joseph R.; Courtney, Daniel M.; d’Etienne, James P.; Diercks, Deborah B.; Garrett, John S.; Jones, Alan E.; Mackenzie, David C.; Madsen, Troy; Matuskowitz, Andrew J.; Mumma, Bryn E.; Nordenholz, Kristen E.; Pagenhardt, Justine; Runyon, Michael S.; Stubblefield, William B.; Willoughby, Christopher B.; Emergency Medicine, School of MedicineBackground: The objective was to test if low-risk emergency department patients with vitamin K antagonist (venous thromboembolism [VTE]; including venous thrombosis and pulmonary embolism [PE]) can be safely and effectively treated at home with direct acting oral (monotherapy) anticoagulation in a large-scale, real-world pragmatic effectiveness trial. Methods: This was a single-arm trial, conducted from 2016 to 2019 in accordance with the Standards for Reporting Implementation Studies guideline in 33 emergency departments in the United States. Participants had newly diagnosed VTE with low risk of death based upon either the modified Hestia criteria, or physician judgment plus the simplified PE severity index score of zero, together with nonhigh bleeding risk were eligible. Patients had to be discharged within 24 hours of triage and treated with either apixaban or rivaroxaban. Effectiveness was defined by the primary efficacy and safety outcomes, image-proven recurrent VTE and bleeding requiring hospitalization >24 hours, respectively, with an upper limit of the 95% CI for the 30-day frequency of VTE recurrence below 2.0% for both outcomes. Results: We enrolled 1421 patients with complete outcomes data, including 903 with venous thrombosis and 518 with PE. The recurrent VTE requiring hospitalization occurred in 14/1421 (1.0% [95% CI, 0.5%-1.7%]), and bleeding requiring hospitalization occurred in 12/1421 (0.8% [0.4%-1.5%). The rate of severe bleeding using International Society for Thrombosis and Haemostasis criteria was 2/1421 (0.1% [0%-0.5%]). No patient died, and serious adverse events occurred in 2.5% of venous thrombosis patients and 2.3% of patients with PE. Medication nonadherence was reported by patients in 8.0% (6.6%-9.5%) and was associated with a risk ratio of 6.0 (2.3-15.2) for VTE recurrence. Among all patients diagnosed with VTE in the emergency department during the period of study, 18% of venous thrombosis patients and 10% of patients with PE were enrolled. Conclusions: Monotherapy treatment of low-risk patients with venous thrombosis or PE in the emergency department setting produced a low rate of bleeding and VTE recurrence, but may be underused. Patients with venous thrombosis and PE should undergo risk-stratification before home treatment. Improved patient adherence may reduce rate of recurrent VTE.Item Points to consider in ethically constructing patient-controlled electronic health records(2012-08-31) Meslin, Eric M.; Alpert, Sheri A.; Carroll, Aaron E.; Odell, Jere D.; Schwartz, Peter H.Patient advocates and leaders in informatics have long proposed that patients should have greater ability to control the information in their electronic health record (EHR), including how it can be accessed by their health care providers. The value of such “granular” control, as it has been termed, has been supported prominently in an influential report by the President’s Council of Advisors on Science and Technology (PCAST). Recently, the U.S. Department of Health and Human Services (HHS) Office of the National Coordinator for Health Information Technology (ONC) funded several projects to study key components of EHR systems, including exploring ways to allow granular control. This “Points to Consider” document provides an overview of the benefits, risks and challenges of granular control of EHRs; a review of the key ethical principles, values, and Fair Information Practices that ought to guide development of an EHR that accommodates granular control, and seven detailed Points to Consider to guide decision making.Item Predicting Job Adaptability: A Facet-Level Examination of the Relationship Between Conscientiousness and Adaptive Performance with Autonomy as a Moderator(2012-08-27) Crowley, Megan L.; Hazer, John; Williams, Jane R.; Devine, Dennis J. (Dennis John)Change has become a prevalent feature of today’s organizations, resulting in an increased demand for workers who are able to adapt to the dynamic nature of the environment. Recently, many have suggested that traditional models of job performance should be expanded to include an adaptive performance dimension. Research in this relatively new domain has focused on defining adaptive performance and understanding how it may be predicted. This study contributes to these efforts by testing the personality trait of conscientiousness as a predictor of adaptive performance, with both constructs being studied at their domain and facet levels. The incremental validity of conscientiousness over cognitive ability is also examined, and autonomy is investigated as a moderator of the conscientiousness-adaptive performance relationships. A sample of 212 undergraduate students who work at least 20 hours per week participated in the study by completing an online survey and a cognitive ability assessment. Conscientiousness was supported as a good predictor of adaptive performance overall. However, the predictor-outcome results did vary over the domain and facet levels, emphasizing the importance of studying both levels. At the two-facet level of conscientiousness, the achievement motivation facet was shown to have stronger relationships with the adaptive performance dimensions compared to the dependability facet. At the six-facet level of conscientiousness, the three achievement motivation facets and one dependability facet (i.e., dutifulness) were significantly related to all eight performance dimensions, but the other two dependability facets (i.e., orderliness and cautiousness) were not significantly related to all of the adaptive performance dimensions. Conscientiousness did provide significant incremental validity over cognitive ability at the domain level and for almost all of the facet-level relationships, but cognitive ability was not related to adaptive performance or any other study variables. Autonomy was supported as a moderator with 16 significant interactions uncovered at the facet level. However, these significant interactions only involved three (i.e., interpersonal, learning, and cultural) of the eight adaptive performance dimensions. Overall, these results supported the conscientiousness-adaptive performance relationship and contributed new findings to the adaptive performance domain that have implications for employee selection and performance management.