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Item Adolescent decision making about participation in a hypothetical HIV vaccine trial(Elsevier, 2015-03-10) Alexander, Andreia B.; Ott, Mary A.; Lally, Michelle A.; Sniecinski, Kevin; Baker, Alyne; Zimet, Gregory D.; Department of Pediatrics, IU School of MedicinePurpose The purpose of this study was to examine the process of adolescent decision-making about participation in an HIV vaccine clinical trial, comparing it to adult models of informed consent with attention to developmental differences. Methods As part of a larger study of preventive misconception in adolescent HIV vaccine trials, we interviewed 33 male and female 16–19-year-olds who have sex with men. Participants underwent a simulated HIV vaccine trial consent process, and then completed a semistructured interview about their decision making process when deciding whether or not to enroll in and HIV vaccine trial. An ethnographic content analysis approach was utilized. Results Twelve concepts related to adolescents' decision-making about participation in an HIV vaccine trial were identified and mapped onto Appelbaum and Grisso's four components of decision making capacity including understanding of vaccines and how they work, the purpose of the study, trial procedures, and perceived trial risks and benefits, an appreciation of their own situation, the discussion and weighing of risks and benefits, discussing the need to consult with others about participation, motivations for participation, and their choice to participate. Conclusion The results of this study suggest that most adolescents at high risk for HIV demonstrate the key abilities needed to make meaningful decisions about HIV vaccine clinical trial participation.Item An emerging field of research: challenges in pediatric decision making(SAGE Publications, 2015-04) Lipstein, Ellen A.; Brinkman, William B.; Fiks, Alexander G.; Hendrix, Kristin S.; Kryworuchko, Jennifer; Miller, Victoria A.; Prosser, Lisa A.; Ungar, Wendy J.; Fox, David; Department of Pediatrics, IU School of MedicineThere is growing interest in pediatric decision science, spurred by policies advocating for children's involvement in medical decision making. Challenges specific to pediatric decision research include the dynamic nature of child participation in decisions due to the growth and development of children, the family context of all pediatric decisions, and the measurement of preferences and outcomes that may inform decision making in the pediatric setting. The objectives of this article are to describe each of these challenges, to provide decision researchers with insight into pediatric decision making, and to establish a blueprint for future research that will contribute to high-quality pediatric medical decision making. Much work has been done to address gaps in pediatric decision science, but substantial work remains. Understanding and addressing the challenges that exist in pediatric decision making may foster medical decision-making science across the age spectrum.Item The ethics of information: absolute risk reduction and patient understanding of screening(Journal of General Internal Medicine, 2008-06) Meslin, Eric M.; Schwartz, Peter H.Some experts have argued that patients should routinely be told the specific magnitude and absolute probability of potential risks and benefits of screening tests. This position is motivated by the idea that framing risk information in ways that are less precise violates the ethical principle of respect for autonomy and its application in informed consent or shared decision-making. In this Perspective, we consider a number of problems with this view that have not been adequately addressed. The most important challenges stem from the danger that patients will misunderstand the information or have irrational responses to it. Any initiative in this area should take such factors into account and should consider carefully how to apply the ethical principles of respect for autonomy and beneficence.Item Exploring the Relationships Among Social Support, Patient Activation, and Pain-Related Outcomes(Oxford Academic, 2022-04) Matthias, Marianne S.; Hirsh, Adam T.; Ofner, Susan; Daggy, Joanne; Medicine, School of MedicineObjective Social support has been linked to more effective pain adaptation. The relationship between social support and other relevant constructs is less well understood. Chief among these is patient activation, which has robust links to effective self-management, yet has not been well studied in chronic pain. We sought to better understand these relationships in an effort to inform future intervention strategies for patients with chronic pain. Methods Using baseline data from a clinical trial with patients with chronic pain (N = 213), we analyzed the relationships among perceived social support and patient activation, depression, anxiety, general health perceptions, pain centrality, pain catastrophizing, and pain intensity and interference. Multiple linear regression was used to examine the effect of social support on outcomes. Patient activation was explored as a mediator of the effect of social support on outcomes. Results Social support was significantly associated with all outcomes except pain. Social support explained the greatest variance in patient activation (squared semi-partial correlation = 0.081), followed by depression (0.073) and general health perceptions (0.072). Patient activation was not found to be a significant mediator of the effect of social support on pain-related outcomes. Conclusions These findings provide insight into the roles of patient activation and social support in chronic pain management. Although patient activation did not mediate the relationship between social support and outcomes, this study is an important step toward gaining a more complete understanding of constructs thought to be related to pain self-management and points to the need to advance theory in this area to guide future research. Such work is needed to optimize interventions for patients with chronic pain.Item Parenthood and severe mental illness: Relationships with recovery(American Psychological Association, 2014-01-09) Bonfils, Kelsey A.; Adams, Erin L.; Firmin, Ruth L.; White, Laura M.; Salyers, Michelle P.; Department of Psychology, School of ScienceObjective Parenting is an important life domain for many people, but little research examines the parenting experience and its role in recovery for those with a severe mental illness. The current study provides preliminary evidence of how these concepts are related in a sample of individuals living with severe mental illness attending a community mental health center. We also explored potential differences between mothers and fathers, which could help better tailor services to meet the needs of parents with severe mental illness. Methods Data were obtained during baseline interviews for a study testing an intervention designed to increase shared decision-making in psychiatric treatment. Participants (N = 167) were administered measures of patient activation, recovery, autonomy preference, hope, and trust in providers. We compared parents and non-parents and compared mothers and fathers using chi-square, t-tests, and, where appropriate, analysis of covariance. Results Parents had a significantly higher level of trust in their psychiatric care provider than non-parents. Contrary to hypotheses, parents were less active in their treatment and preferred less information-seeking autonomy than did non-parents, but did not differ on other recovery-related indices. No differences on recovery-related indices were detected between mothers and fathers. Secondary analyses revealed parents with minor children had more hope than parents of older children. Conclusions and Implications for Practice Although parents may have higher levels of trust in their physicians, our preliminary findings suggest that parents with severe mental illness may benefit from increased efforts to help them be more active and interested in information about their illnesses.Item Plain-language medical vocabulary for precision diagnosis(Nature Research, 2018-04) Vasilevsky, Nicole A.; Foster, Erin D.; Engelstad, Mark E.; Carmody, Leigh; Might, Matt; Chambers, Chip; Dawkins, Hugh J. S.; Lewis, Janine; Della Rocca, Maria G.; Snyder, Michelle; Boerkoel, Cornelius F.; Rath, Ana; Terry, Sharon F.; Kent, Alastair; Searle, Beverly; Baynam, Gareth; Jones, Erik; Gavin, Pam; Bamshad, Michael; Chong, Jessica; Groza, Tudor; Adams, David; Resnick, Adam C.; Heath, Allison P.; Mungall, Chris; Holm, Ingrid A.; Rageth, Kayli; Brownstein, Catherine A.; Shefchek, Kent; McMurry, Julie A.; Robinson, Peter N.; Köhler, Sebastian; Haendel, Melissa A.; Medicine, School of Medicine