Conceptualizing, Understanding, and Assessing Research Literacy in a Diverse Population: A Dissertation

Background: Racial and ethnic minorities are under-represented participants in health-related research. Comprehension and understanding of the research process are a barrier to research participation. A potential approach to engaging underserved populations in research is through improving research literacy, which we define as “the capacity to obtain, process and understand basic information needed to make informed decisions about research participation.” Methods: Through primary data collection and mixed-methods approaches, this doctoral thesis seeks to: 1) define and conceptualize the domains, determinants, and impacts of research literacy through the development of a multi-component comprehensive framework, 2) operationalize research literacy by developing and psychometrically testing the Research Literacy Scale, and 3) quantify differences in research literacy, measured by the Research Literacy Scale, by race/ethnicity, race-related factors, and other socio-demographic factors. Results: We created a framework outlining eight domains of research literacy and multi-faceted influences of societal, community, researcher, and participant factors that may influence an individual’s level of research literacy. The Research Literacy Scale created is comprised of 16 items, with a KR-20 estimate of 0.81 and test-retest reliability of 0.84. We found differences in mean scale scores by race/ethnicity, age, education, income, and health literacy (all p \u3c 0.01). African-Americans and Latinos have lower research literacy scores, as compared to non-Latino Whites. Race-consciousness was associated with research literacy score. Conclusions: This study is the first to define, assess, and quantify factors associated with research literacy in a diverse community sample and may provide insights on approaches to enhance minority engagement in health-related research

On Edge: the impact of race-related vigilance on obesity status in African-Americans

OBJECTIVE: Nearly half of African-Americans are classified as obese. Perceived racism has been associated with obesity, yet the internal experiences of racism have received little attention. African Americans who face racism may ready themselves to cope through survival strategies, including race-related vigilance. This study explores the association between race-related vigilance and obesity in African Americans. DESIGN AND METHODS: The Reactions to Race module of the Behavioral Risk Factor Surveillance Survey (years 2002-2010) was used. Our sample size consisted of 12,214 African-Americans. Race-related vigilance was assessed as: How often do you think about your race? and classified as: never, \u3c daily, daily, and \u3e daily. Obesity was dichotomized as body mass index (BMI) \u3e /=30 kg/m2 vs. \u3c 30 kg/m2 using self-reported weight and height. Multivariable logistic models assessed the association between race-related vigilance and obesity. RESULTS: Seventeen percent of respondents reported thinking about their race \u3e daily; 14% daily; 31% \u3c daily, and 39% reported never thinking about their race. Compared to those who reported never thinking about their race, the adjusted odds of obesity were 0.91, 95% CI: 0.72-1.15 among those thinking about their race \u3c daily, 1.09, 95%CI: 0.81-1.46 among those thinking about their race daily, and 1.37, 95% CI: 1.07-1.76 among those thinking about their race \u3e daily. CONCLUSIONS: Frequently thinking about one\u27s race was a risk factor for obesity in African-Americans in this study. Internalized impacts of racism captured through race-related vigilance may be particularly detrimental to African-Americans, driving their risk for obesity

Addressing Gaps to Promote Co-learning and Bidirectional Capacity Building in Community Engaged Research: Challenges and Untapped Opportunities

Moderator: Stephenie Lemon, Ph.D., UMass Worcester Prevention Research Center Session Titles and Presenters -Learning From Each Other: Other Partnerships, Other Experiences - Linda Silka, Senator George J. Mitchell Center for Sustainability Solutions, University of Maine -What is Research Literacy? - Lauren R. Powell, PhD Candidate Clinical and Population Health Research, UMass Medical School -Learning by Doing to Enhance a Community-University Partnership - TBN, The Puerto Rican Cultural Center - Phil Granberry, PhD, The Gaston Institute, UMass Boston -Enhancing Cultural Competency in Research Teams: The Promise of Simulation-based Training - Marie Boone, Executive Vice President of Planning, Mosaic Cultural Complex Session Description: Community engagement is increasingly recognized as an essential approach for the development of a body of health-related research that will ultimately improve population health status and promote health equity. However, this approach poses many challenges as well as untapped opportunities. Specific to this session, co-learning and bidirectional capacity building are widely promulgated core principles of community engaged research. The intent of the principles are for community and academic members to learn from each other in both formal and informal ways, leveraging respective strengths, in order to develop sustainable knowledge, skills and resources. In a community–university, partnerships, researchers and community residents must commit not only to sharing their skills and experiences, but also to learning from and valuing each other’s skills. This requires that both groups engage in a bidirectional learning process. Through this co-learning and capacity building, research partnerships and participation can be improved and ultimately the research itself can potentially have greater impact. The purpose of this session is to provide a series of brief presentations from academia and community organizations that will outline specific issues experienced in promoting co-learning and bidirectional capacity for academic teams, community partners and community members and to describe local efforts to enhance co-learning, bidirectional capacity and community engaged research overall

DO LATITUDE, ELEVATION, TEMPERATURE, AND PRECIPITATION INFLUENCE BODY AND CLUTCH SIZES OF FEMALE COMMON FIVE-LINED SKINKS, PLESTIODON FASCIATUS (LINNAEUS, 1758)?

Common Five-lined Skinks (Plestiodon fasciatus) have an extensive distribution that includes much of eastern North America. We examined 490 female specimens (274 with putative clutch sizes) from throughout the range to see if latitude, elevation, mean annual temperature, and/or mean annual precipitation affected body or clutch sizes. We predicted that larger females would produce larger clutches, latitude and elevation would negatively affect both body and clutch sizes, and that temperature and precipitation would exert a positive effect. Our results did not consistently support those predictions. Body size was positively associated with latitude, negatively associated with temperature, and not associated with elevation or precipitation. Clutch size was not related to female body size, but in most instances was positively associated with temperature and precipitation but negatively associated with elevation and latitude. Effectively K-selected in the North and r-selected in the South, body and clutch sizes in this species appear to be responding to different select

Psychometric Development of the Research and Knowledge Scale

BACKGROUND: Many research participants are misinformed about research terms, procedures, and goals; however, no validated instruments exist to assess individual\u27s comprehension of health-related research information. We propose research literacy as a concept that incorporates understanding about the purpose and nature of research. OBJECTIVES: We developed the Research and Knowledge Scale (RaKS) to measure research literacy in a culturally, literacy-sensitive manner. We describe its development and psychometric properties. RESEARCH DESIGN: Qualitative methods were used to assess perspectives of research participants and researchers. Literature and informed consent reviews were conducted to develop initial items. These data were used to develop initial domains and items of the RaKS, and expert panel reviews and cognitive pretesting were done to refine the scale. We conducted psychometric analyses to evaluate the scale. SUBJECTS: The cross-sectional survey was administered to a purposive community-based sample (n=430) using a Web-based data collection system and paper. MEASURES: We did classic theory testing on individual items and assessed test-retest reliability and Kuder-Richardson-20 for internal consistency. We conducted exploratory factor analysis and analysis of variance to assess differences in mean research literacy scores in sociodemographic subgroups. RESULTS: The RaKS is comprised of 16 items, with a Kuder-Richardson-20 estimate of 0.81 and test-retest reliability 0.84. There were differences in mean scale scores by race/ethnicity, age, education, income, and health literacy (all P \u3c 0.01). CONCLUSIONS: This study provides preliminary evidence for the reliability and validity of the RaKS. This scale can be used to measure research participants\u27 understanding about health-related research processes and identify areas to improve informed decision-making about research participation

Experimental evidence of genome-wide impact of ecological selection during early stages of speciation-with-gene-flow

Theory predicts that speciation-with-gene-flow is more likely when the consequences of selection for population divergence transitions from mainly direct effects of selection acting on individual genes to a collective property of all selected genes in the genome. Thus, understanding the direct impacts of ecologically based selection, as well as the indirect effects due to correlations among loci, is critical to understanding speciation. Here, we measure the genome-wide impacts of host-associated selection between hawthorn and apple host races of Rhagoletis pomonella (Diptera: Tephritidae), a model for contemporary speciation-with-gene-flow. Allele frequency shifts of 32 455 SNPs induced in a selection experiment based on host phenology were genome wide and highly concordant with genetic divergence between co-occurring apple and hawthorn flies in nature. This striking genome-wide similarity between experimental and natural populations of R. pomonella underscores the importance of ecological selection at early stages of divergence and calls for further integration of studies of eco-evolutionary dynamics and genome divergence

Macrosystems ecology: Understanding ecological patterns and processes at continental scales

Macrosystems ecology is the study of diverse ecological phenomena at the scale of regions to continents and their interactions with phenomena at other scales. This emerging subdiscipline addresses ecological questions and environmental problems at these broad scales. Here, we describe this new field, show how it relates to modern ecological study, and highlight opportunities that stem from taking a macrosystems perspective. We present a hierarchical framework for investigating macrosystems at any level of ecological organization and in relation to broader and finer scales. Building on well-established theory and concepts from other subdisciplines of ecology, we identify feedbacks, linkages among distant regions, and interactions that cross scales of space and time as the most likely sources of unexpected and novel behaviors in macrosystems. We present three examples that highlight the importance of this multiscaled systems perspective for understanding the ecology of regions to continents

A preventative lifestyle intervention for older adults (lifestyle matters): a randomised controlled trial

to test whether an occupation-based lifestyle intervention can sustain and improve the mental well-being of adults aged 65 years or over compared to usual care, using an individually randomised controlled trial. 288 independently living adults aged 65 years or over, with normal cognition, were recruited from two UK sites between December 2011 and November 2015. lifestyle Matters is a National Institute for Health and Care Excellence recommended multi-component preventive intervention designed to improve the mental well-being of community living older people at risk of decline. It involves weekly group sessions over 4 months and one to one sessions. the primary outcome was mental well-being at 6 months (mental health (MH) dimension of the SF-36). Secondary outcomes included physical health dimensions of the SF-36, extent of depression (PHQ-9), quality of life (EQ-5D) and loneliness (de Jong Gierveld Loneliness Scale), assessed at 6 and 24 months. data on 262 (intervention = 136; usual care = 126) participants were analysed using intention to treat analysis. Mean SF-36 MH scores at 6 months differed by 2.3 points (95 CI: -1.3 to 5.9; P = 0.209) after adjustments. analysis shows little evidence of clinical or cost-effectiveness in the recruited population with analysis of the primary outcome revealing that the study participants were mentally well at baseline. The results pose questions regarding how preventive interventions to promote well-being in older adults can be effectively targeted in the absence of proactive mechanisms to identify those who at risk of decline. ISRCTN67209155

The Effectiveness of Lower-Limb Wearable Technology for Improving Activity and Participation in Adult Stroke Survivors: A Systematic Review

Background: With advances in technology, the adoption of wearable devices has become a viable adjunct in poststroke rehabilitation. Regaining ambulation is a top priority for an increasing number of stroke survivors. However, despite an increase in research exploring these devices for lower limb rehabilitation, little is known of the effectiveness. Objective: This review aims to assess the effectiveness of lower limb wearable technology for improving activity and participation in adult stroke survivors. Methods: Randomized controlled trials (RCTs) of lower limb wearable technology for poststroke rehabilitation were included. Primary outcome measures were validated measures of activity and participation as defined by the International Classification of Functioning, Disability and Health. Databases searched were MEDLINE, Web of Science (Core collection), CINAHL, and the Cochrane Library. The Cochrane Risk of Bias Tool was used to assess the methodological quality of the RCTs. Results: In the review, we included 11 RCTs with collectively 550 participants at baseline and 474 participants at final follow-up including control groups and participants post stroke. Participants' stroke type and severity varied. Only one study found significant between-group differences for systems functioning and activity. Across the included RCTs, the lowest number of participants was 12 and the highest was 151 with a mean of 49 participants. The lowest number of participants to drop out of an RCT was zero in two of the studies and 19 in one study. Significant between-group differences were found across three of the 11 included trials. Out of the activity and participation measures alone, P values ranged from P=.87 to P≤.001. Conclusions: This review has highlighted a number of reasons for insignificant findings in this area including low sample sizes, appropriateness of the RCT methodology for complex interventions, a lack of appropriate analysis of outcome data, and participant stroke severity

Shifted phase of EEG cross-frequency coupling in individuals with Phelan-McDermid syndrome

Background Phelan-McDermid Syndrome (PMS) is a rare condition caused by deletion or mutation of the SHANK3 gene. Individuals with PMS frequently present with intellectual disability, autism spectrum disorder, and other neurodevelopmental challenges. Electroencephalography (EEG) can provide a window into network-level function in PMS. Methods Here, we analyze EEG data collected across multiple sites in individuals with PMS (n = 26) and typically developing individuals (n = 15). We quantify oscillatory power, alpha-gamma phase-amplitude coupling strength, and phase bias, a measure of the phase of cross frequency coupling thought to reflect the balance of feedforward (bottom-up) and feedback (top-down) activity. Results We find individuals with PMS display increased alpha-gamma phase bias (U = 3.841, p < 0.0005), predominantly over posterior electrodes. Most individuals with PMS demonstrate positive overall phase bias while most typically developing individuals demonstrate negative overall phase bias. Among individuals with PMS, strength of alpha-gamma phase-amplitude coupling was associated with Sameness, Ritualistic, and Compulsive behaviors as measured by the Repetitive Behavior Scales-Revised (Beta = 0.545, p = 0.011). Conclusions Increased phase bias suggests potential circuit-level mechanisms underlying phenotype in PMS, offering opportunities for back-translation of findings into animal models and targeting in clinical trials