Cultivating an ecosystem: A qualitative exploration of sustainability in long-standing community-based participatory research (CBPR) partnerships.

Background: While sustainability is crucial to the success of community-based participatory research (CBPR) partnerships, there is a lack of conceptual clarity on what defines sustainability and what characterizes sustainability-promoting practices in long-standing (in existence ≥ 6 years) CBPR partnerships. Objectives: The aim of this article is to explore the definition of sustainability, as well as practices that influence sustainability from the perspectives of academic and community experts in long-standing CBPR partnerships. Methods: This qualitative analysis is part of Measurement Approaches to Partnership Success (MAPS), a participatory mixed methods validity study that examined "success" and its contributing factors in long-standing CBPR partnerships. Thematic analysis of 21 semi-structured interviews was conducted, including 10 academic and 11 community experts of long-standing CBPR partnerships. Results: The key defining components of sustainability we identified include: distinguishing between sustaining the work of the partnership and ongoing relationships among partners; working towards a common goal over time; and enduring changes that impact the partnership. We further identified strengthening and capacity building practices at multiple levels of the partnership that served to promote the sustainability of the partnership's work and of ongoing relationships among partners. Conclusions: Sustainability can be understood as supporting an ecosystem that surrounds the beneficial relationships between academic and community partners. Ongoing evaluation and application of practices that promote the sustainability of partnership activities and relationships may strengthen the long-term effectiveness of CBPR partnerships in advancing health equity.

Cultivating an Ecosystem: A Qualitative Exploration of Sustainability in Long-Standing Community-Based Participatory Research Partnerships.

BACKGROUND: While sustainability is crucial to the success of community-based participatory research (CBPR) partnerships, there is a lack of conceptual clarity on what defines sustainability and what characterizes sustainability-promoting practices in long-standing (in existence 6 years or longer) CBPR partnerships. OBJECTIVES: The aim of this article is to explore the definition of sustainability, as well as practices that influence sustainability from the perspectives of academic and community experts in long-standing CBPR partnerships. METHODS: This qualitative analysis is part of Measurement Approaches to Partnership Success, a participatory mixed methods validity study that examined "success" and its contributing factors in long-standing CBPR partnerships. Thematic analysis of 21 semistructured interviews was conducted, including 10 academic and 11 community experts of long-standing CBPR partnerships. RESULTS: The key defining components of sustainability we identified include: distinguishing between sustaining the work of the partnership and ongoing relationships among partners; working towards a common goal over time; and enduring changes that impact the partnership. We further identified strengthening and capacity building practices at multiple levels of the partnership that served to promote the sustainability of the partnership's work and of ongoing relationships among partners. CONCLUSIONS: Sustainability can be understood as supporting an ecosystem that surrounds the beneficial relationships between academic and community partners. Ongoing evaluation and application of practices that promote the sustainability of partnership activities and relationships may strengthen the long-term effectiveness of CBPR partnerships in advancing health equity.

Expanding the Reach of an Evidence-Based, System-Level, Racial Equity Intervention: Translating ACCURE to the Maternal Healthcare and Education Systems.

The abundance of literature documenting the impact of racism on health disparities requires additional theoretical, statistical, and conceptual contributions to illustrate how anti-racist interventions can be an important strategy to reduce racial inequities and improve population health. Accountability for Cancer Care through Undoing Racism and Equity (ACCURE) was an NIH-funded intervention that utilized an antiracism lens and community-based participatory research (CBPR) approaches to address Black-White disparities in cancer treatment completion. ACCURE emphasized change at the institutional level of healthcare systems through two primary principles of antiracism organizing: transparency and accountability. ACCURE was successful in eliminating the treatment completion disparity and improved completion rates for breast and lung cancer for all participants in the study. The structural nature of the ACCURE intervention creates an opportunity for applications in other health outcomes, as well as within educational institutions that represent social determinants of health. We are focusing on the maternal healthcare and K-12 education systems in particular because of the dire racial inequities faced by pregnant people and school-aged children. In this article, we hypothesize cross-systems translation of a system-level intervention exploring how key characteristics of ACCURE can be implemented in different institutions. Using core elements of ACCURE (i.e., community partners, milestone tracker, navigator, champion, and racial equity training), we present a framework that extends ACCURE's approach to the maternal healthcare and K-12 school systems. This framework provides practical, evidence-based antiracism strategies that can be applied and evaluated in other systems to address widespread structural inequities.

How Can We PrEP? Exploring Black MSM's Experiences With Pre-Exposure Prophylaxis Through Photovoice.

Pre-exposure prophylaxis (PrEP) can reduce the risk of HIV infection by over 90% among those at high risk via sexual transmission. PrEP acceptance and adherence remains low among those at highest risk of HIV, including Black men who have sex with men (MSM) in the southern U.S. This community-based participatory research project explored Black MSM's experiences with PrEP in North Carolina through photovoice, a methodology using photography and discussion. Our findings highlighted challenges and opportunities with PrEP, including intersectional stigma, the need for improved patient-provider education, and the role of community-based organizations in closing patient-provider gaps. This work is a first step towards understanding the daily lives of Black MSM on PrEP in the Triangle Region of North Carolina, including barriers and facilitators to PrEP use. Implications for public health practice highlight the need for conducting community-level interventions, integrating PrEP into primary care, and normalizing PrEP through community conversations.

The Other Side of Through: Young Breast Cancer Survivors' Spectrum of Sexual and Reproductive Health Needs.

The long-term reproductive health impact of cancer treatments is a concern for premenopausal women with a history of breast cancer. This study examined the unmet sexual and reproductive health needs of breast cancer survivors, as well as concordances and discordances in needs by childbearing status and race. We interviewed 17 women diagnosed with breast cancer between the ages of 18 and 45 years and living in North Carolina. To analyze these data, we used the Sort and Sift, Think and Shift© method, a multidimensional qualitative analysis approach. We learned that breast cancer survivors (a) received limited reproductive health information, (b) desired realistic expectations of conceiving postcancer, (c) struggled with adjusting to their altered physical appearance, and (d) had menopause symptoms that led to sexual health and quality of life issues. Breast cancer survivors are in need of and desire more education and resources to address their sexual and reproductive health concerns.

A Person-Centered Approach to the Study of Black Adolescent Religiosity, Racial Identity, and Sexual Initiation.

Decreasing the number of adolescents who have never had sexual intercourse is one way to address sexual health disparities. We used intersectionality to explore the joint effects of religiosity and racial identity on Black adolescent sexual initiation. Data originated from the National Survey of American Life-Adolescent (n = 1,170), a nationally representative study of Black adolescents. Latent profile analysis and survival analysis were used to evaluate study hypotheses. Results showed four distinct profiles of religiosity and racial identity. These profiles explained 19% of the variability in sexual initiation. Additional analyses revealed sociodemographic differences in profile membership. Findings contribute to understanding ethnic heterogeneity among Black adolescents and racial identity and religiosity as sociocultural factors that influence sexual initiation; and support reconceptualizing Black adolescent religiosity.

Structural Interventions to Reduce and Eliminate Health Disparities.

Health disparities research in the United States over the past 2 decades has yielded considerable progress and contributed to a developing evidence base for interventions that tackle disparities in health status and access to care. However, health disparity interventions have focused primarily on individual and interpersonal factors, which are often limited in their ability to yield sustained improvements. Health disparities emerge and persist through complex mechanisms that include socioeconomic, environmental, and system-level factors. To accelerate the reduction of health disparities and yield enduring health outcomes requires broader approaches that intervene upon these structural determinants. Although an increasing number of innovative programs and policies have been deployed to address structural determinants, few explicitly focused on their impact on minority health and health disparities. Rigorously evaluated, evidence-based structural interventions are needed to address multilevel structural determinants that systemically lead to and perpetuate social and health inequities. This article highlights examples of structural interventions that have yielded health benefits, discusses challenges and opportunities for accelerating improvements in minority health, and proposes recommendations to foster the development of structural interventions likely to advance health disparities research.

Peer support opportunities across the cancer care continuum: a systematic scoping review of recent peer-reviewed literature.

OBJECTIVE: Evidence suggests peer support (PS) is as an effective strategy for enhancing prevention and control of chronic and infectious diseases, including cancer. This systematic scoping review examines the range and variety of interventions on the use of PS across the cancer care continuum. METHOD: We used a broad definition of PS to capture a wide-range of interventions and characterize the current status of the field. Literature searches were conducted using PubMed, SCOPUS, and CINAHL to identify relevant articles published from January 2011 to June 2016. We screened the title and abstracts of 2087 articles, followed by full-text screening of 420 articles, resulting in a final sample of 242 articles of which the most recent 100 articles were reviewed (published June 2014 to May 2016). RESULTS: A number of the recent intervention studies focused on breast cancer (32%, breast cancer only) or multiple cancer sites (23%). Although the interventions spanned all phases of the cancer care continuum, only 2% targeted end-of-life care. Seventy-six percent focused on clinical outcomes (e.g., screening, treatment adherence) and 72% on reducing health disparities. Interventions were primarily phone-based (44%) or delivered in a clinic setting (44%). Only a few studies (22%) described the impact of providing PS on peer supporters. CONCLUSION: PS appears to be a widely used approach to address needs across the cancer care continuum, with many opportunities to expand its reach.

"What I wish my doctor knew about my life": Using photovoice with immigrant Latino adolescents to explore barriers to healthcare.

BACKGROUND: Latinos in the USA have reported more frequent discriminatory treatment in healthcare settings when compared to their White counterparts. In particular, foreign-born Latinos report discrimination more than Latinos born in the USA. Such patient-reported racial/ethnic discrimination appears to contribute to specific health consequences, including treatment seeking delays, interruptions in care, and medical mistrust. Immigrant Latino adolescents in the USA experience a variety of health disparities, yet little is known about their views of the healthcare experience, their perceptions of discriminatory treatment, or ways in which they would like their relationships with healthcare providers to be different. METHODS: This work, based in a larger interdisciplinary social work-led initiative, used photovoice with two groups of immigrant Latino adolescents to explore the topic "what I wish the doctor knew about my life." The findings were used to engage healthcare stakeholders as part of a pilot intervention aimed at decreasing provider bias toward immigrant Latino youth. RESULTS/DISCUSSION: Findings illuminated ways that the immigrant experience affects the lives and health of Latino adolescents in North Carolina. To improve their health, it is critical to understand, from their perspectives, the ways their lives can be complicated by experiences of migration, stereotypes, and cross-cultural communication challenges and how their interactions with authority figures in one sector, such as education, influence interactions in health care. Understanding the healthcare barriers faced by immigrant Latino youth is critical to any effort to improve the system of care for immigrant Latino populations.

Selling the product: Strategies to increase recruitment and retention of Spanish-speaking Latinos in biomedical research.

INTRODUCTION: The Latino population in the US is rapidly growing and faces profound health disparities; however, engagement of Latinos in biomedical research remains low. Our community-based participatory research (CBPR) partnership has recruited 2,083 Spanish-speaking Latinos into 21 studies over 15 years. We sought to identify and describe the strategies we have used to successfully recruit and retain Spanish-speaking Latinos in research. METHODS: We abstracted and analyzed data from archived study notes, progress reports, team meeting minutes, and in-depth interviews conducted annually from CBPR partnership members. We used a nominal group process to refine and prioritize strategies. RESULTS: Overall, 13 recruitment strategies and 12 retention strategies emerged. These strategies relied on the creativity and perseverance of the study team and partners. CONCLUSIONS: It is essential that we develop and disseminate effective recruitment and retention strategies that engage Latinos in biomedical research to reduce health disparities and promote health equity.

Making a difference in medical trainees' attitudes toward Latino patients: A pilot study of an intervention to modify implicit and explicit attitudes.

Negative attitudes and discrimination against Latinos exist in the dominant U.S. culture and in healthcare systems, contributing to ongoing health disparities. This article provides findings of a pilot test of Yo Veo Salud (I See Health), an intervention designed to positively modify attitudes toward Latinos among medical trainees. The research question was: Compared to the comparison group, did the intervention group show lower levels of implicit bias against Latinos versus Whites, and higher levels of ethnocultural empathy, healthcare empathy, and patient-centeredness? We used a sequential cohort, post-test design to evaluate Yo Veo Salud with a sample of 69 medical trainees. The intervention setting was an academic medical institution in a Southeastern U.S. state with a fast-growing Latino population. The intervention was delivered, and data were collected online, between July and December of 2014. Participants in the intervention group showed greater ethnocultural empathy, healthcare empathy, and patient-centeredness, compared to the comparison group. The implicit measure assessed four attitudinal dimensions (pleasantness, responsibility, compliance, and safety). Comparisons between our intervention and comparison groups did not find any average differences in implicit anti-Latino bias between the groups. However, in a subset analysis of White participants, White participants in the intervention group demonstrated a significantly decreased level of implicit bias in terms of pleasantness. A dose response was also founded indicating that participants involved in more parts of the intervention showed more change on all measures. Our findings, while modest in size, provide proof of concept for Yo Veo Salud as a means for increasing ethno-cultural and physician empathy, and patient-centeredness among medical residents and decreasing implicit provider bias toward Latinos.

Saliendo Adelante: Stressors and Coping Strategies Among Immigrant Latino Men Who Have Sex With Men in a Nontraditional Settlement State.

Immigrant Latino men who have sex with men (MSM) are marginalized along multiple dimensions (e.g., ethnicity, sexual orientation, language use), which can negatively affect their health and well-being. As little is known about how this subgroup experiences the stress of marginalization and how, in turn, they cope with such stress, this study investigated stressors and coping strategies to better understand the factors shaping Latino MSM health. Assisted by a community advisory committee, we conducted in-depth interviews with 15 foreign-born Latino MSM in a nontraditional settlement state. Drawing on grounded theory methods, we analyzed transcripts iteratively to identify processes and characterize themes. Results were confirmed in member check interviews (n = 4) and findings were further contextualized through key informant interviews (n = 3). Participants reported ubiquitous, concurrent stressors due to being an immigrant, being a sexual minority, and being working poor. In particular, homophobia within families and local Latino communities was seen as pervasive. Some participants faced additional stressors due to being undocumented and not being Mexican. Participants drew on four types of coping strategies, with no dominant coping response: passive coping (i.e., not reacting to stressors); attempting to change stressors; seeking social support; and seeking distractions. Family ties, especially with mothers, provided key emotional support but could also generate stress related to participants' sexuality. This study lays a foundation for future work and is particularly relevant for Latino MSM in nontraditional settlement states. Findings may inform future interventions to reduce stressors and increase resiliency, which can positively affect multiple health outcomes.

Community-Guided Focus Group Analysis to Examine Cancer Disparities.

BACKGROUND: Accountability for Cancer Care through Undoing Racism™ and Equity (ACCURE) is a systems-change intervention addressing disparities in treatment initiation and completion and outcomes for early stage Black and White breast and lung cancer patients. Using a community-based participatory research (CBPR) approach, ACCURE is guided by a diverse partnership involving academic researchers, a nonprofit community-based organization, its affiliated broader based community coalition, and providers and staff from two cancer centers. OBJECTIVES: This paper describes the collaborative process our partnership used to conduct focus groups and to code and analyze the data to inform two components of the ACCURE intervention: 1) a "power analysis" of the cancer care system and 2) the development of the intervention's training component, Healthcare Equity Education and Training (HEET), for cancer center providers and staff. METHODS: Using active involvement of community and academic partners at every stage in the process, we engaged Black and White breast and lung cancer survivors at two partner cancer centers in eight focus group discussions organized by race and cancer type. Participants were asked to describe "pressure point encounters" or critical incidents during their journey through the cancer system that facilitated or hindered their willingness to continue treatment. Community and academic members collaborated to plan and develop materials, conduct focus groups, and code and analyze data. CONCLUSIONS: A collaborative qualitative data analysis process strengthened the capacity of our community-medical-academic partnership, enriched our research moving forward, and enhanced the transparency and accountability of our research approach.

Implicit Racial/Ethnic Bias Among Health Care Professionals and Its Influence on Health Care Outcomes: A Systematic Review.

BACKGROUND: In the United States, people of color face disparities in access to health care, the quality of care received, and health outcomes. The attitudes and behaviors of health care providers have been identified as one of many factors that contribute to health disparities. Implicit attitudes are thoughts and feelings that often exist outside of conscious awareness, and thus are difficult to consciously acknowledge and control. These attitudes are often automatically activated and can influence human behavior without conscious volition. OBJECTIVES: We investigated the extent to which implicit racial/ethnic bias exists among health care professionals and examined the relationships between health care professionals' implicit attitudes about racial/ethnic groups and health care outcomes. SEARCH METHODS: To identify relevant studies, we searched 10 computerized bibliographic databases and used a reference harvesting technique. SELECTION CRITERIA: We assessed eligibility using double independent screening based on a priori inclusion criteria. We included studies if they sampled existing health care providers or those in training to become health care providers, measured and reported results on implicit racial/ethnic bias, and were written in English. DATA COLLECTION AND ANALYSIS: We included a total of 15 studies for review and then subjected them to double independent data extraction. Information extracted included the citation, purpose of the study, use of theory, study design, study site and location, sampling strategy, response rate, sample size and characteristics, measurement of relevant variables, analyses performed, and results and findings. We summarized study design characteristics, and categorized and then synthesized substantive findings. MAIN RESULTS: Almost all studies used cross-sectional designs, convenience sampling, US participants, and the Implicit Association Test to assess implicit bias. Low to moderate levels of implicit racial/ethnic bias were found among health care professionals in all but 1 study. These implicit bias scores are similar to those in the general population. Levels of implicit bias against Black, Hispanic/Latino/Latina, and dark-skinned people were relatively similar across these groups. Although some associations between implicit bias and health care outcomes were nonsignificant, results also showed that implicit bias was significantly related to patient-provider interactions, treatment decisions, treatment adherence, and patient health outcomes. Implicit attitudes were more often significantly related to patient-provider interactions and health outcomes than treatment processes. CONCLUSIONS: Most health care providers appear to have implicit bias in terms of positive attitudes toward Whites and negative attitudes toward people of color. Future studies need to employ more rigorous methods to examine the relationships between implicit bias and health care outcomes. Interventions targeting implicit attitudes among health care professionals are needed because implicit bias may contribute to health disparities for people of color.

Collaborating to support Healthy Kids, Healthy Communities partnerships.

The Robert Wood Johnson Foundation (RWJF) (http://www.rwjf.org/en.html) launched Healthy Kids, Healthy Communities (HKHC) in 2008, with a $33.4 million commitment to help reverse the childhood obesity epidemic by 2015. With grant funding and technical assistance, HKHC supported 50 diverse community partnerships focusing on populations at greatest risk for obesity. Active Living By Design served as the national program office, and St. Louis-based Transtria conducted the evaluation. Collaboration fundamentally shaped HKHC's national program design and strategy, the grantee selection process, technical assistance, the HKHC learning network, and evaluation. This article describes the ways in which the concept of collaboration was defined and practiced among the Robert Wood Johnson Foundation, Active Living By Design, Transtria, and other national partners, and how it shaped the evolving vision for and expectations from HKHC grantees. Collaboration contributed to HKHC grantees' success, helped build the healthy communities movement, and influenced philanthropic practices.

Latino sexual and gender identity minorities promoting sexual health within their social networks: process evaluation findings from a lay health advisor intervention.

The HOLA intervention was a lay health advisor intervention designed to reduce the disproportionate HIV burden borne by Latino sexual and gender identity minorities (gay, bisexual, and other men who have sex with men, and transgender persons) living in the United States. Process evaluation data were collected for over a year of intervention implementation from 11 trained Latino male and transgender lay health advisors (Navegantes) to document the activities each Navegante conducted to promote condom use and HIV testing among his or her eight social network members enrolled in the study. Over 13 months, the Navegantes reported conducting 1,820 activities. The most common activity was condom distribution. Navegantes had extensive reach beyond their enrolled social network members, and they engaged in health promotion activities beyond social network members enrolled in the study. There were significant differences between the types of activities conducted by Navegantes depending on who was present. Results suggest that lay health advisor interventions reach large number of at-risk community members and may benefit populations disproportionately affected by HIV.

Redefining racial residential segregation and its association with physical activity among African Americans 50 years and older: a mixed methods approach.

Physical inactivity is one of the factors contributing to disproportionate disease rates among older African Americans. Previous literature indicates that older African Americans are more likely to live in racially segregated neighborhoods and that racial residential segregation is associated with limited opportunities for physical activity. A cross-sectional mixed methods study was conducted guided by the concept of therapeutic landscapes. Multilevel regression analyses demonstrated that racial residential segregation was associated with more minutes of physical activity and greater odds of meeting physical activity recommendations. Qualitative interviews revealed the following physical activity related themes: aging of the neighborhood, knowing your neighbors, feeling of safety, and neighborhood racial identity. Perceptions of social cohesion enhanced participants' physical activity, offering a plausible explanation to the higher rates of physical activity found in this population. Understanding how social cohesion operates within racially segregated neighborhoods can help to inform the design of effective interventions for this population.

Beyond incentives for involvement to compensation for consultants: increasing equity in CBPR approaches.

BACKGROUND: Community-based participatory research (CBPR) strives for equitable collaboration among community and academic partners throughout the research process. To build the capacity of academia to function as effective research partners with communities, the North Carolina Translational and Clinical Sciences Institute (NC TraCS), home of the University of North Carolina at Chapel Hill (UNC-CH)'s Clinical and Translational Sciences Award (CTSA), developed a community engagement consulting model. This new model harnesses the expertise of community partners with CBPR experience and compensates them equitably to provide technical assistance to community-academic research partnerships. OBJECTIVES: This paper describes approaches to valuing community expertise, the importance of equitable compensation for community partners, the impact on the community partners, opportunities for institutional change, and the constraints faced in model implementation. METHODS: Community Experts (CEs) are independent contractor consultants. CEs were interviewed to evaluate their satisfaction with their engagement and compensation for their work. LESSONS LEARNED: (1) CEs have knowledge, power, and credibility to push for systems change. (2) Changes were needed within the university to facilitate successful consultation to community-academic partnerships. (3) Sustaining the CE role requires staff support, continued compensation, increased opportunities for engagement, and careful consideration of position demands. (4) The role provides benefits beyond financial compensation. (5) Opportunities to gather deepened relationships within the partnership and built collective knowledge that strengthened the project. CONCLUSIONS: Leveraging CE expertise and compensating them for their role benefits both university and community. Creating a place for community expertise within academia is an important step toward equitably including the community in research.

Exploring the sexual health priorities and needs of immigrant Latinas in the southeastern United States: a community-based participatory research approach.

Latinas living in the United States are disproportionately affected by HIV/AIDS and sexually transmitted infections. However, few effective interventions currently exist that are designed to meet the priorities and needs of recently arrived and less acculturated immigrant Latinas who are settling in the southeastern United States. To identify sexual health priorities, gaps in information and skills, and key intervention characteristics to improve sexual health among immigrant Latinas, a community-based participatory research partnership conducted four focus groups with Latinas, in central North Carolina. Findings revealed a lack of knowledge about sexual health, shame and embarrassment related to clinical exams and conversations about sex, multilevel barriers to sexual health, and disease transmission misinformation. Findings also suggested that interventions should include information about a broad range of sexual and reproductive health topics and skill building. Such interventions could serve to assist in diminishing health disparities experienced among this vulnerable population.

Eliminating inequities in health care: understanding perceptions and participation in an antiracism initiative.

Antiracism training for staff of health care institutions is a promising intervention strategy to address racial and ethnic disparities in health care. In 2001, Southern County Public Health Department (SCPHD) staff completed a mandatory Dismantling Racism (DR) training, and some continued with an optional DR process to challenge institutional racism within their agency. To explore factors influencing participation in optional DR activities (i.e., caucuses and Change Team), a process evaluation was conducted involving in-depth interviews with 28 SCPHD administrators and staff members, whose participation in the DR process varied. Findings demonstrate that familiarity with and receptiveness to the relationship between racism and health care inequities influenced participation in DR activities. Perceived relevance and impact of the DR process on the organization and staff were also major factors affecting participation. Improvements for implementing such efforts including the consideration of institutional power and other implications for addressing racial health care inequities through antiracism initiatives are discussed.