Community Health Builders Program: A Collaborative Model Connecting National Health Thought Leaders With Community-Level Champions.

Make Well Known Foundation (MWKF), a nonprofit organization focused on supporting the health of minoritized and underserved populations, piloted the Community Health Builders (CHB) program. This connected MKWF Steering Committee members-national thought leaders in health-with leaders of underserved populations in Greensboro, NC, with the goal of translating research into practice. Steering Committee members provided education, instruction, and resources to community leaders that could then be transferred to area residents to cultivate better health. A roundtable meeting was first organized to allow community leaders to share insights into the highest priority needs of Greensboro's Black residents. Four topics resulted that became the focus of the training modules (called "accelerator forums") that formed the core of the CHB program. Each accelerator forum was led by Steering Committee members and local-level topic experts to educate and share resources with community leaders. The program concluded with a local health and resource fair, which exposed Greensboro residents to the resources shared during CHB program trainings. Overall, the CHB program pilot demonstrated success in the collaborative engagement between national- and community-level leaders based on measures of increased knowledge and self-efficacy in supporting Greensboro residents in the four accelerator forum topics. In a final debrief session, CHB participants shared their perspective that the progress achieved in the community needed to be sustained through continued national- and community-level collaboration and ongoing community training. This key insight and the need for sustained engagement will be incorporated into all future programs.

Using theory and user-centered design in digital health: The development of the mychoice communication tool to prepare patients and improve informed decision making regarding clinical trial participation.

OBJECTIVE: Designing salient digital health interventions requires theoretically-based formative research and user-center design with stakeholder input throughout impacting content and technology design. mychoice is a theory-based, stakeholder-guided digital health tool to improve clinical trial informed decision making, particularly among African American patients. METHODS: mychoice was developed by (1) mixed-methods formative research, including in-depth interviews (n=16) and surveys (N=41) with African American cancer patients who had and had not participated in a clinical trial; (2) e-tool design process including perceptual mapping analysis to prioritize messages, multi-disciplinary team and stakeholder input; and (3) iterative production and user testing. RESULTS: Interview findings showed that clinical trial participants expressed more positive attributes about and an openness to consider clinical trials, even though they expressed common concerns such as "fear of being a guinea pig". Survey results indicated that clinical trial participants expressed they had been given information to make the decision (P = .001), while those who had not more frequently reported (P > .001) that no one had talked to them about trials. Perceptual mapping indicated that values such as "helping find a cure" or "value to society" had little resonance to those who had not participated, providing message strategy for prototype development. User testing of the tool resulted in modifications; the most significant was the adaptation to a multi-cultural version. CONCLUSIONS: With the promise of digital health interventions, theory-guided, user-centered and best practice development is critical and mychoice serves as an example of the application of these principles.

Contralateral prophylactic mastectomy: A qualitative approach to exploring the decision making process.

The proportion of women with unilateral breast cancer and no familial or genetic risk factors who elect contralateral prophylactic mastectomy (CPM) has grown dramatically, even in the absence of clear data demonstrating improved outcomes. To further extend the literature that addresses treatment decision-making, qualitative interviews were conducted with eleven women who considered CPM. A social ecological model of breast cancer treatment decision-making provided the conceptual framework, and grounded theory was used to identify the cognitive, psychosocial, and emotional influences motivating treatment choice. This research identified five themes that give context to women's decision-making experience: (1) variability in physician communication, (2) immediacy of the decision, (3) meaning of being proactive about treatment, (4) meaning of risk, and (5) women's relationship with their breasts. The results suggest that greater emphasis should be placed on a more nuanced understanding of patients' emotional reaction to breast cancer and managing the decision-making environment.

Using perceptual mapping methods to understand gender differences in perceived barriers and benefits of clinical research participation in urban minority HIV+ patients.

Minority participation in HIV clinical trials research is critical to understanding the impact of medications or behavioral interventions, but little is known about gender differences in perceptions of participation. We surveyed 50 minority HIV+ patients from an urban clinic to assess perceived risks/benefits of clinical trial research participation and used innovative marketing methods to analyze results. Perceptual mapping and vector message-modeling, a method that creates 3-D models representing how groups conceptualize elements, were used to assess how male and female participants could be motivated to participate. Results showed men farther away from participation and more concerned with HIV disclosure and experimentation than women. Men expressed distrust of the medical system, doubted HIV's origin, and knew less about research implementation. Women were closer to participation in both behavior and medical trials and perceived medication issues as more significant, including fear of losing medication stability, medications not working, being in the placebo group, and experiencing side effects. Vector modeling shows that messages would need to focus on different aspects of clinical research for men and women and that interventions aimed at minority HIV+ patients to encourage clinical trial participation would need to be targeted to their unique perceptions. Understanding gender perceptions of HIV clinical research has significant implications for targeting messages to increase minority participation.

Randomized Trial of a Computerized Touch Screen Decision Aid to Increase Acceptance of Colonoscopy Screening in an African American Population with Limited Literacy.

The goal of this study was to assess the effectiveness of a touch screen decision aid to increase acceptance of colonoscopy screening among African American patients with low literacy, developed and tailored using perceptual mapping methods grounded in Illness Self-Regulation and Information-Communication Theories. The pilot randomized controlled trial investigated the effects of a theory-based intervention on patients' acceptance of screening, including their perceptions of educational value, feelings about colonoscopy, likelihood to undergo screening, and decisional conflict about colonoscopy screening. Sixty-one African American patients with low literacy, aged 50-70 years, with no history of colonoscopy, were randomly assigned to receive a computerized touch screen decision aid (CDA; n = 33) or a literacy appropriate print tool (PT; n = 28) immediately before a primary care appointment in an urban, university-affiliated general internal medicine clinic. Patients rated the CDA significantly higher than the PT on all indicators of acceptance, including the helpfulness of the information for making a screening decision, and reported positive feelings about colonoscopy, greater likelihood to be screened, and lower decisional conflict. Results showed that a touch screen decision tool is acceptable to African American patients with low iteracy and, by increasing intent to screen, may increase rates of colonoscopy screening.

Developing a typology of African Americans with limited literacy based on preventive health practice orientation: implications for colorectal cancer screening strategies.

Preventive health messages are often tailored to reach broad sociodemographic groups. However, within groups, there may be considerable variation in perceptions of preventive health practices, such as colorectal cancer screening. Segmentation analysis provides a tool for crafting messages that are tailored more closely to the mental models of targeted individuals or subgroups. This study used cluster analysis, a psychosocial marketing segmentation technique, to develop a typology of colorectal cancer screening orientation among 102 African American clinic patients between the ages of 50 and 74 years with limited literacy. Patients were from a general internal medicine clinic in a large urban teaching hospital, a subpopulation known to have high rates of colorectal cancer and low rates of screening. Preventive screening orientation variables included the patients' responses to questions involving personal attitudes and preferences toward preventive screening and general prevention practices. A k-means cluster analysis yielded three clusters of patients on the basis of their screening orientation: ready screeners (50.0%), cautious screeners (30.4%), and fearful avoiders (19.6%). The resulting typology clearly defines important subgroups on the basis of their preventive health practice perceptions. The authors propose that the development of a validated typology of patients on the basis of their preventive health perceptions could be applicable to a variety of health concerns. Such a typology would serve to standardize how populations are characterized and would provide a more accurate view of their preventive health-related attitudes, values, concerns, preferences, and behaviors. Used with standardized assessment tools, it would provide an empirical basis for tailoring health messages and improving medical communication.

Prospective assessment of contralateral prophylactic mastectomy decision-making in women with average risk: an application of perceptual mapping.

Women with early-stage unilateral breast cancer and no familial or genetic risk factors are increasingly electing contralateral prophylactic mastectomy (CPM), despite the lack of evidence demonstrating improved outcomes. To better understand and extend the literature focused on treatment decision-making, a survey was conducted among women with early-stage breast cancer and no associated risk factors, who were in the process of making a surgical decision. This prospective study sought to expand our understanding of the factors that influence patients' decision to have CPM, with the goal of providing healthcare providers with useful guidance in supporting breast cancer patients who are making treatment decisions. Data were collected for this prospective study through an internet survey. Results were analyzed using perceptual mapping, a technique that provides visual insight into the importance of specific variables to groups of women making different surgical decisions, not available through conventional analyses. Results suggest that women more likely to elect CPM demonstrate greater worry about breast cancer through experiences with others and feel the need to take control of their health through selection of the most aggressive treatment option. The information obtained offers guidance for the development of targeted intervention and counsel that will support patients' ability to make high quality, informed decisions.

Use of Emotional Response Modeling to Develop More Effective Risk Communication for Limited Literacy Adults: Evaluation of a "Dirty Bomb" Decision Aid.

Behavioral, attitudinal, and emotional reactions to terrorism can be minimized by communication that promotes successful response through preparedness. However, a challenge to adequate preparedness is the substantial proportion of adults with "below basic" or "basic" literacy skills and how this affects development of health messages. This research explored whether a non-verbal emotional measurement and modeling technique (AdSAM®) can be used with a limited literacy population to support the development of message strategies for disaster situations such as a "dirty bomb" terror event. Adults with limited literacy were randomly assigned to review either a standard CDC decision aid written at a 9th grade level (n=22) or an adapted aid written at a 6rd grade level (n=28). Using the AdSAM® emotional response instrument, participants answered questions regarding their feelings about a 'dirty bomb'. The group shown the adaptive aid had more positive emotional responses, including less arousal and greater empowerment. The AdSAM® approach can provide researchers with insights into the design of tailored messages for a limited literacy population in high risk, high-emotion situations.

How Do Low-Literacy Populations Perceive "Dirty Bombs"? Implications for Preparedness Messages.

Potential terror events such as "dirty bombs" could have significant public health effects, but little is known about how low-literacy populations perceive dirty bombs, their trust in public health or government officials to provide credible information, and their willingness to comply with recommended actions. We surveyed 50 low-literacy adults from a large urban center; they were mostly members of ethnic minority groups. We used unique social marketing methods-perceptual mapping and vector message modeling-to create 3-dimensional models that reflected respondents' knowledge of what a dirty bomb is, their intended behaviors should one occur, and their concerns about complying with "shelter in place" recommendations. To further understand individual variations in this at-risk group, a k-means cluster analysis was used to identify 3 distinct segments, differing on trust of local authorities and their emergency response, willingness to comply with emergency directives, and trust of information sources. Message strategies targeting each segment were developed to focus on concepts important to moving the groups toward a "shelter in place" behavior, revealing key differences in how best to communicate with risk communication. We discuss how these methods helped elucidate specific differences in each segment's understanding of and likely response during the event of a "dirty bomb" and how these techniques can be used to create more effective message strategies targeted to these groups.

Correlates to Human Papillomavirus Vaccination Status and Willingness to Vaccinate in Low-Income Philadelphia High School Students.

BACKGROUND: Little is known about the correlates of human papillomavirus (HPV) vaccination or willingness to be vaccinated in urban, minority adolescents. METHODS: Using responses to the 2013 Youth Risk Behavior Survey in Philadelphia, a random sample of high schools provided weighted data representing 20,941 9th to 12th graders. Stratified by either having had or willingness to have the vaccine, bivariate analysis with sexual behavior, preventive health behaviors, mental health, substance use, and demographic characteristics were examined and then multivariable regression models were developed to estimate significant correlates. RESULTS: Respondents were 52.3% female, 84.4% non-White, and 65.9% ≥16 years; 43% reported having had the HPV vaccine, and of those not vaccinated, 66% reported willingness to be vaccinated. Logistic regression models indicate that females (odds ratio [OR] = 3.12, p < .01) and those reporting human immunodeficiency virus (HIV) testing (OR = 2.10, p < .01) were more likely to be vaccinated. Those reporting condom use during last intercourse (OR = 0.40; p = .05) and current marijuana use (OR = 0.37; p = .03) were less likely to indicate willingness to be vaccinated. CONCLUSIONS: Important areas for intervention include addressing misconceptions or feelings of "immunity," especially for those using condoms. Understanding the correlation between HIV testing and HPV vaccination is also an important intervention opportunity for schools hoping to increase adolescent vaccination rates.

Attitudes and perceptions of urban African Americans of a "dirty bomb" radiological terror event: results of a qualitative study and implications for effective risk communication.

OBJECTIVES: Radiological terror presents a real threat, but little is known about how low-income, urban African Americans may respond to such threats. The aim of this study was to understand the unique challenges of this group and to explore their knowledge of what a "dirty bomb" is, their intended behaviors should one occur, and their barriers to complying with "shelter in place" recommendations. METHODS: Thirty-seven 18-65-year-olds who were users of community centers in disadvantaged areas participated in 3 focus groups in Philadelphia. Results were analyzed by using the Krueger method of analyzing narrative text. RESULTS: The responses highlighted little knowledge or concern about a dirty bomb. Lack of trust in local authorities was expressed, with participants indicating that they did not feel their needs were addressed. While shelter in place was understood, most said they would still check on family or talk with others to get the "whole truth" because the most trusted information sources were neighbors and community leaders. CONCLUSION: Our results indicate that a risk communication intervention for urban minorities may support desirable behaviors in the event of a dirty bomb, but successful communication will require establishing a local leader as a spokesperson to convince people of the importance of sheltering in place.

Comparing standard versus prosocial internet support groups for patients with breast cancer: a randomized controlled trial of the helper therapy principle.

PURPOSE: Internet support group (ISG) members benefit from receiving social support and, according to the helper therapy principle, by providing support to others. To test the mental health benefits of providing support to others, this trial compared the efficacy of a standard ISG (S-ISG) and an enhanced prosocial ISG (P-ISG). METHODS: A two-armed randomized controlled trial with 1-month pretest and post-test assessments was conducted with women (N = 184) diagnosed in the past 36 months with nonmetastatic breast cancer who reported elevated anxiety or depression. Women were randomly assigned to either the S-ISG or P-ISG condition. Both conditions included six professionally facilitated live chat sessions (90-minute weekly sessions) and access to an asynchronous discussion board; P-ISG also included structured opportunities to help and encourage others. RESULTS: Relative to the S-ISG, participants in the P-ISG condition exhibited more supportive behaviors (emotional, informational, and companionate support), posted more messages that were other-focused and fewer that were self-focused, and expressed less negative emotion (P < .05). Relative to the S-ISG, participants in the P-ISG condition had a higher level of depression and anxiety symptoms after the intervention (P < .05). CONCLUSION: Despite the successful manipulation of supportive behaviors, the P-ISG did not produce better mental health outcomes in distressed survivors of breast cancer relative to an S-ISG. The prosocial manipulation may have inadvertently constrained women from expressing their needs openly, and thus, they may not have had their needs fully met in the group. Helping others may not be beneficial as a treatment for distressed survivors of breast cancer.