"Whatever I have, I have made by coming into this profession": the intersection of resources, agency, and achievements in pathways to sex work in Kolkata, India.

This article investigated the complex interplay of choice, socioeconomic structural factors, and empowerment influencing engagement in sex work. The analysis was focused on pathways into and reasons for staying in sex work from in-depth qualitative interviews with participants (n = 37) recruited from the Durbar community-led structural intervention in Kolkata, India. Kabeer's theory of empowerment focused on resources, agency, and achievements was utilized to interpret the results. Results identified that contexts of disempowerment constraining resources and agency set the stage for initiating sex work, typically due to familial poverty, loss of a father or husband as a breadwinner, and lack of economic opportunities for women in India. Labor force participation in informal sectors was common, specifically in domestic, construction, and manufacturing work, but was typically insufficient to provide for families and also often contingent on sexual favors. The availability of an urban market for sex work served as a catalyst or resource, in conjunction with Durbar's programmatic resources, for women to find and exercise agency and achieve financial and personal autonomy not possible in other work or as dependents on male partners. Resources lost in becoming a sex worker due to stigma, discrimination, and rejection by family and communities were compensated for by achievements in gaining financial and social resources, personal autonomy and independence, and the ability to support children and extended family. Durbar's programs and activities (e.g., savings and lending cooperative, community mobilization, advocacy) function as empowering resources that are tightly linked to sex workers' agency, achievements, and sex work pathways.

A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders.

To assess the experienced or perceived barriers and facilitators to health research participation for major US racial/ethnic minority populations, we conducted a systematic review of qualitative and quantitative studies from a search on PubMed and Web of Science from January 2000 to December 2011. With 44 articles included in the review, we found distinct and shared barriers and facilitators. Despite different expressions of mistrust, all groups represented in these studies were willing to participate for altruistic reasons embedded in cultural and community priorities. Greater comparative understanding of barriers and facilitators to racial/ethnic minorities' research participation can improve population-specific recruitment and retention strategies and could better inform future large-scale prospective quantitative and in-depth ethnographic studies.

A comparison of MSM stigma, HIV stigma and depression in HIV-positive Latino and African American men who have sex with men (MSM).

Little research has examined differences in HIV stigma versus MSM stigma and the role of these stigmas in depression for HIV-positive Latino and African American men who have sex with men (MSM), subgroups disproportionately impacted by HIV in the US. MSM stigma, HIV stigma, depression, stress and social support were examined among HIV-positive Latino (n = 100) and African American (n = 99) MSM patients at five HIV clinics in Los Angeles County, California. In multiple regression models, Latino MSM had higher HIV stigma scores (p = 0.002) but lower MSM stigma scores (p < 0.001) compared to African American MSM. General support and stress were associated with HIV stigma (p < 0.001), but not MSM stigma. Both HIV stigma (p < 0.0001) and MSM stigma (p < 0.0001) were associated with depression. These data underscore the differences in experienced stigma for Latino and African American MSM and can be used to shape effective stigma reduction programs and behavioral counseling.

Autonomy versus automation: perceptions of nonmydriatic camera choice for teleretinal screening in an urban safety net clinic.

OBJECTIVE: Teleretinal screening with nonmydriatic cameras has been presented as a means of increasing the number of patients assessed for diabetic retinopathy in urban safety net clinics. It has been hypothesized that automated nonmydriatic cameras may improve screening rates by reducing the learning curve for camera use. In this article, we examine the impact of introducing automated nonmydriatic cameras to urban safety net clinics whose photographers had previously used manual cameras. MATERIALS AND METHODS: We evaluated the impact of manual and automated digital nonmydriatic cameras on teleretinal screening using a quantitative analysis of readers' image quality ratings as well as a qualitative analysis, through in-depth interviews, of photographers' experiences. RESULTS: With the manual camera, 68% of images were rated "adequate" or better, including 24% rated "good" and 20% rated "excellent." With the automated camera, 61% were rated "adequate" or better, including 9% rated "good" and 0% rated "excellent." Photographers expressed frustration with their inability to control image-taking settings with the automated camera, which led to unexpected delays. CONCLUSIONS: For safety net clinics in which medical assistants are already trained to take photographs for diabetic retinopathy screening with a manual camera, the introduction of automated cameras may lead to frustration and paradoxically contribute to increased patient wait times. When photographers have achieved a high degree of aptitude with manual cameras and value the control they have over camera features, the introduction of automated cameras should be approached with caution and may require extensive training to increase user acceptability.

Impact of Comprehensive Health Insurance on Quality of Life in Low-Income Hispanic Men with Prostate Cancer.

OBJECTIVE: To evaluate the effect of the transition from IMPACT, a disease-focused treatment program, to comprehensive health insurance under Medicaid through the Affordable Care Act (ACA) on general and prostate cancer-specific quality of life (QoL) on a cohort of previously uninsured low-income men. We hypothesize that general QoL would improve and prostate cancer-specific QoL would remain the same after the transition to comprehensive health insurance. METHODS: We assessed and compared general QoL using the RAND SF-12v2™ (12-Item Short Form Survey, version 2) and prostate cancer-specific QoL using the UCLA PCI (Prostate Cancer Index) one year before, at, and one year after the transition between 30 men who transitioned to comprehensive insurance (newly insured/Medicaid group) and 54 men who remained in the prostate cancer program (uninsured/IMPACT group). We assessed the independent effects of Medicaid coverage on QoL outcomes using repeated-measures regression. RESULTS: Our cohort was composed primarily of Hispanic men (82%). At transition, patient demographics and clinical characteristics were similar between the groups. General and prostate cancer-specific QoL did not differ between the groups and remained stable over time, Radical prostatectomy as primary treatment and shorter time since treatment were associated with worse urinary and sexual function across both groups and over all three time points. CONCLUSION: Those who transitioned to full-scope insurance and those who remained in the free prostate cancer-focused treatment program had stable general and prostate cancer-specific QoL. High-touch navigation aspects of a disease-focused program may have contributed to stability in outcomes.

'Their type of drugs': perceptions of substance use, sex and social boundaries among young African American and Latino gay and bisexual men.

Studies of sexuality have increasingly shifted their attention towards understanding the social contexts that inform and organise sexual behaviour. Building on this work, we examine how substance use and sex are socially organised and meaningful activities for young African American and Latino gay and bisexual men who use substances with sex. Drawing on 30 qualitative interviews in Los Angeles and New York, we identify the ways in which social boundaries inform substance use among these young men. We find that many of them view the gay and racial/ethnic communities they belong to as differentiated by patterns of substance use. Further, they see these communities as actively constructing group boundaries through substance use, sanctioning the use of particular substances while simultaneously discouraging the use or discussion of others. For these young men, racial/ethnic and gay communities provide salient contexts in which the use of certain substances and not others is socially meaningful. Findings demonstrate the important and heretofore unrecognised ways that perceived social boundaries inform these young men's use of substances. As both protective and marginalising influences, perceptions of communities and social identities have real consequences for the sexual health of young African American and Latino gay and bisexual men.

Mechanisms for Community Health Worker Action on Patient-, Institutional-, and Community-Level Barriers to Primary Care in a Safety-Net Setting.

Medically and socially complex patients disproportionately face barriers to primary care, contributing to health inequities and higher health care costs. This study elicited perspectives on how community health workers (CHWs) act upon barriers to primary care in 5 patient (n = 25) and 3 CHW focus groups (n = 17). Participants described how CHWs acted on patient-level barriers through social support, empowerment, and linkages, and system-level barriers by enhancing care team awareness of patient circumstances, optimizing communication, and advocating for equitable treatment. Limitations existed for influencing entrenched community-level barriers. CHWs, focusing on patient preferences, motivators, and circumstances, intervened on multilevel barriers to primary care, including advocacy for equitable treatment. These mechanisms have implications for existing CHW conceptual models.

Comprehension, utility, and preferences of prostate cancer survivors for visual timelines of patient-reported outcomes co-designed for limited graph literacy: meters and emojis over comics.

OBJECTIVE: Visual timelines of patient-reported outcomes (PRO) can help prostate cancer survivors manage longitudinal data, compare with population averages, and consider future trajectories. PRO visualizations are most effective when designed with deliberate consideration of users. Yet, graph literacy is often overlooked as a design constraint, particularly when users with limited graph literacy are not engaged in their development. We conducted user testing to assess comprehension, utility, and preference of longitudinal PRO visualizations designed for prostate cancer survivors with limited literacy. MATERIALS AND METHODS: Building upon our prior work co-designing longitudinal PRO visualizations with survivors, we engaged 18 prostate cancer survivors in a user study to assess 4 prototypes: Meter, Words, Comic, and Emoji. During remote sessions, we collected data on prototype comprehension (gist and verbatim), utility, and preference. RESULTS: Participants were aged 61-77 (M = 69), of whom half were African American. The majority of participants had less than a college degree (95%), had inadequate health literacy (78%), and low graph literacy (89%). Among the 4 prototypes, Meter had the best gist comprehension and was preferred. Emoji was also preferred, had the highest verbatim comprehension, and highest rated utility, including helpfulness, confidence, and satisfaction. Meter and Words both rated mid-range for utility, and Words scored lower than Emoji and Meter for comprehension. Comic had the poorest comprehension, lowest utility, and was least preferred. DISCUSSION: Findings identify design considerations for PRO visualizations, contributing to the knowledge base for visualization best practices. We describe our process to meaningfully engage patients from diverse and hard-to-reach groups for remote user testing, an important endeavor for health equity in biomedical informatics. CONCLUSION: Graph literacy is an important design consideration for PRO visualizations. Biomedical informatics researchers should be intentional in understanding user needs by involving diverse and representative individuals during development.

Do social support, stress, disclosure and stigma influence retention in HIV care for Latino and African American men who have sex with men and women?

Limited research has examined the role that social support, stress, stigma and HIV disclosure play in retention in HIV care for African Americans and Latinos. Among 398 Latino and African American men who have sex with men (MSM) and women, the major predictor of retention in HIV care was disclosure of HIV status to more social network members (OR = 1.5; 95% CI: 1.1, 1.9). Among those who had disclosed (n = 334), female gender (OR = 1.8, 95% CI: 1.1, 3.1) and disclosure of HIV status to more network members (OR = 1.5, 95% CI: 1.1, 1.9) was associated with retention in HIV care. General stress was associated with retention in care (OR = 1.2; 95% CI: 1.1, 1.3) for African American MSM who had disclosed. More MSM-stigma was associated with poorer retention (OR = 0.9; 95% CI: 0.8, 0.9) for Latino MSM. Interventions that help patients safely disclose their HIV status to more social network members may improve HIV care retention as would social network counseling for Latino MSM to reduce MSM-stigma.

The role of brothels in reducing HIV risk in Sonagachi, India.

High rates of empowerment, HIV-related knowledge, and condom use among sex workers in Sonagachi, India have been attributed to a community-led intervention called the Sonagachi HIV/AIDS Intervention Program (SHIP). In this research we examined the crucial role of brothels in the success of the intervention. In-depth, semistructured interviews were conducted with 55 participants of SHIP. The results indicate that brothels help sex workers reduce HIV risk by (a) serving as targeted sites for SHIP's HIV intervention efforts, (b) being operated by madams (women managers of brothels) who participate in SHIP's intervention efforts and promote healthy regimes, (c) structuring the economic transactions and sexual performances related to sex work, thus standardizing sex-related behavior, and (d) promoting community empowerment among brothel residents. Implications of these results are discussed for future efforts to replicate SHIP's success in other sex work communities.

The Development of a Novel, Standards-Based Core Curriculum for Community Facing, Clinic-Based Community Health Workers.

Introduction: Historically, CHW trainings have been developed to support community-based CHWs. When CHWs have been trained to engage with patients, typically such trainings have been for short term grant funded projects, focusing on a specific health intervention and not for long term, ongoing engagement of CHWs employed in clinical settings. To the best of our knowledge, this is the first such effort to describe the development of a standards-based training curriculum for clinic-based CHWs using a novel conceptual framework. Methods: Our conceptual approach for curricular development has several innovative features including: (1) a foundational consultation process with CHW national experts to inform curricular development approach, process and content; (2) utilization of the CHW Consensus Project (C3 Project) to provide curricular standards and guide learning objectives; (3) integration of three key stakeholder group perspectives (patients, healthcare teams, and healthcare systems); (4) use of popular education principles, aiming to foster a collaborative learning process; (5) integration of adult learning principles which build on learners' experiences, culminating in a modified apprenticeship model and (6) collaboration with clinical partners throughout planning and development of the curriculum. Results: The resulting standards-based curriculum is comprised of 10 modules, which span three areas of focus: (1) Establishing a professional CHW identity and competencies; (2) Outlining the context, processes and key actors in health care settings with whom CHWs will engage; and (3) Identifying the main forces that shape health and health care outcomes of patients/families and communities. Discussion: We highlight four lessons from our curriculum development process that may help other such efforts. First, curricular development should utilize CHW standards, existing training materials, and community-focused principles to inform curricular content and learning outcomes. Second, curricula should support training delivery using experience-based, participatory approaches, consistent with adult education and popular education principles. Third, training development for clinical settings should also draw from clinical CHW experiences and input. Fourth, curricula should support training for key stakeholders and champions in clinical organizations to improve organizational readiness for integrating CHWs into healthcare teams and health systems. Our results contribute to growing research on effective CHW training methods for clinical settings.

How Can We Help Alleviate the Financial Concerns of Non-Directed (Altruistic) Living Kidney Donors?

INTRODUCTION: The recent increase in non-directed donors (NDDs) in the United States (U.S.) may help reduce the overwhelming number of patients on the waitlist. However, non-directed donation may be limiting its full potential. Out-of-pocket donation costs upward of $8,000 may be a barrier to potential donors with altruistic tendencies, but inadequate financial support. This study aimed to describe the financial concerns of 31 U.S. NDDs. METHODS: We conducted qualitative interviews and administered quantitative demographic surveys between April 2013 and April 2015. Interview transcripts were analyzed using grounded theory techniques to describe and expand on themes relevant to the NDD experience. FINDINGS: We identified 4 sub-themes related to the theme of financial concerns: (1) direct costs related to transportation, lodging, and parking, (2) indirect costs of lost wages encountered from taking time off work to recover from surgery, (3) sources of financial support, and (4) suggestions for alleviating donor financial burden. Two thirds of participants (20) expressed concerns about direct and indirect donation costs. 11 NDDs reported the negative impact of direct costs,15 NDDs had concerns about indirect costs; only 7 donors received supplemental financial support from state mandates and transplant programs. DISCUSSION: Understanding the financial concerns of NDDs may guide improvements in the NDD donation experience that could support individuals who are interested in donating but lack the financial stability to donate. Removing financial disincentives may help increase nondirected donation rates, increase the living donor pool, and the number of kidneys available for transplantation.

Social support, stress and social network characteristics among HIV-positive Latino and African American women and men who have sex with men.

Social support and stress have been poorly characterized for persons with HIV, particularly for racial/ethnic minorities. To address this gap, data on general and HIV-specific support and stress and social network characteristics were collected for 399 African American and Latino women and men who have sex with men (MSM) in Los Angeles County. African American (mean = 41; SD = 17) and Latina (mean = 40; SD = 19) women reported the highest general support. Stress was also highest for Latina women (mean = 18; SD = 11) and higher compared to Latino and African American MSM. African American and Latina women reported receiving most of their social support and stress from family members, while African American and Latino MSM received their support and stress from friends and providers. Finally, Latina and African American women disclosed their HIV status to more network members and received more HIV-specific support compared to MSM. Interventions are needed to help Latino and African American MSM enhance their support networks to manage a stigmatized illness.

CEDRIC: a computerized chronic disease management system for urban, safety net clinics.

To meet the challenge of improving health care quality in urban, medically underserved areas of the US that have a predominance of chronic diseases such as diabetes, we have developed a new information system called CEDRIC for managing chronic diseases. CEDRIC was developed in collaboration with clinicians at an urban safety net clinic, using a community-participatory partnered research approach, with a view to addressing the particular needs of urban clinics with a high physician turnover and large uninsured/underinsured patient population. The pilot implementation focuses on diabetes management. In this paper, we describe the system's architecture and features.

Talk to PAPA: A Systematic Review of Patient/Participant (PAPA) Feedback on Interactions With Community Health Workers Using a Depth Analysis Approach.

Because of their shared backgrounds, community health workers' (CHWs) care of patients/program participants (PAPAs) is assumed to be acceptable, and often not evaluated empirically. Using PRISMA guidelines, we reviewed 9560 articles from 5 databases, selected 37 articles for full-text review, and developed a 5-dimensional depth analysis (focus, context, meaning, range, and voices) to characterize quality/quantity of PAPA feedback. Depth analyses clarified a spectrum of PAPA responses from extremely positive to ambivalence to outright distrust and frustration with perceived CHW limitations. Designing evaluations with 5-dimensional depth analysis can enhance PAPA feedback quality and improve evidence-based, patient-centered, CHW care delivery.

Patient Stories Can Make a Difference in Patient-Centered Research Design.

Amid increasing interest in improving the patient-centeredness of research, new forms of engagement are emerging that enable researchers to get input from community members on research goals, methods, and implementation. This input often includes stories, which are useful for understanding lived experiences of illness and encounters with health care organizations, and for locating these experiences within larger meta-narratives of specific communities. We analyzed the stories in transcripts of 13 Community Engagement Studios and identified 4 major functions that the stories served in the sessions. Major functions included: (1) establishing mutual understanding, (2) adding expansion and depth, (3) characterizing abstract concepts, and (4) providing context for experience, with the latter being the most frequent. We assert that stories can serve to better communicate the complex contexts of patient experiences, helping to align research priorities and research design with community interests, leading to more patient-centered innovations in clinical practice.

The effect of urban street gang densities on small area homicide incidence in a large metropolitan county, 1994-2002.

The presence of street gangs has been hypothesized as influencing overall levels of violence in urban communities through a process of gun-drug diffusion and cross-type homicide. This effect is said to act independently of other known correlates of violence, i.e., neighborhood poverty. To test this hypothesis, we independently assessed the impact of population exposure to local street gang densities on 8-year homicide rates in small areas of Los Angeles County, California. Homicide data from the Los Angeles County Coroners Office were analyzed with original field survey data on street gang locations, while controlling for the established covariates of community homicide rates. Bivariate and multivariate regression analyses explicated strong relationships between homicide rates, gang density, race/ethnicity, and socioeconomic structure. Street gang densities alone had cumulative effects on small area homicide rates. Local gang densities, along with high school dropout rates, high unemployment rates, racial and ethnic concentration, and higher population densities, together explained 90% of the variation in local 8-year homicide rates. Several other commonly considered covariates were insignificant in the model. Urban environments with higher densities of street gangs exhibited higher overall homicide rates, independent of other community covariates of homicide. The unique nature of street gang killings and their greater potential to influence future local rates of violence suggests that more direct public health interventions are needed alongside traditional criminal justice mechanisms to combat urban violence and homicides.

Pre-experience perceptions about telemedicine among African Americans and Latinos in South Central Los Angeles.

This study explores perceptions about telemedicine among urban underserved African American and Latino populations. Telemedicine has been advanced as a vehicle to increase access to specialty care among the urban underserved, yet little is known about its acceptability among these populations. We conducted 10 focus groups with African American and Latino participants (n = 87) in urban Los Angeles in order to explore perceptions about this novel type of care. We found that concerns about telemedicine varied between the two racial/ethnic groups. These findings have implications for important issues such as adoption of telemedicine, patient satisfaction, and doctor-patient interaction. It will be critical to consider perceptions of this healthcare innovation in the development of strategies to market and implement telemedicine among urban, underserved African American and Latino populations.

Researcher perspectives on embedding community stakeholders in T1-T2 research: A potential new model for full-spectrum translational research.

Effective community engagement in T3-T4 research is widespread, however, similar stakeholder involvement is missing in T1-T2 research. As part of an effort to embed community stakeholders in T1-T2 research, an academic community partnered team conducted discussion groups with researchers to assess perspectives on (1) barriers/challenges to including community stakeholders in basic science, (2) skills/training required for stakeholders and researchers, and (3) potential benefits of these activities. Engaging community in basic science research was perceived as challenging but with exciting potential to incorporate "real-life" community health priorities into basic research, resulting in a new full-spectrum translational research model.