Braiding the Healing Gifts of Photovoice for Social Change: The Means Are Ends in the Making.

Photovoice is an important participatory action method for motivating social change. The potential for this change within the processes of the method remains under-explored. We present the voice and perspectives of three health promotion practitioners who have important connections to photovoice: a grandmother and co-founder of the method, a nurse from Wales, and an early adopter seeking change. Through braided storytelling, the voices describe their history with photovoice and how their relationship to the method has changed over time, arguing ultimately that in photovoice the means are as important as the ends for advancing relations with others, understanding and working with power, and realizing the gifts the processes bring.

A practical method for integrating community priorities in planning and implementing cancer control programs.

PURPOSE: Community engagement is essential in effective public health programs. This paper illustrates the methods used to engage community in the development of a multi-level implementation intervention to address cancer disparities related to hereditary cancer syndromes. METHODS: Implementation Mapping (IM), was used to guide the co-creation of an intervention. Key partners were recruited to a 13-member statewide community advisory board (CAB) representing healthcare and community-based organizations. As part of a needs assessment, a 3-round modified Delphi method with the CAB was used to identify implementation outcomes to use in later steps of IM. An anonymous online survey of a validated community engagement measure assessed CAB members' satisfaction with the process. RESULTS: Using a modified Delphi method as part of the needs assessment of IM, the CAB identified three broad categories of strategies: Changing infrastructure using patient navigation; training and educating patients, navigators and providers; and supporting clinicians in case identification and management. Self-reported satisfaction with the IM and Delphi process was high. CONCLUSIONS: Implementation Mapping facilitated the use of available evidence, new data, and community engagement to identify strategies to improve the delivery of programs to reduce hereditary cancer disparities. The modified Delphi method was easy to administer in a virtual environment and may be a useful for others in community-engaged research.

Community-engaged Research Disruption: The Impact of the COVID-19 Pandemic on Research With Communities.

BACKGROUND: The pandemic has had dire consequences on community-engaged research. OBJECTIVES: We describe research challenges imposed by the pandemic on our breast and cervical cancer intervention study with Southeast Asian immigrant women, and strategies used to maintain study continuity. METHODS: The pandemic's impact on the research team, recruitment and retention of participants, study design, and strategies executed to these issues are described. RESULTS: Strategies employed to address research challenges include implementing coronavirus disease 2019 protocols for conducting community research; recruiting participants online, outside of the planned community locations, and through social media; and enhancing the study design by using respondent-driven sampling. In addition to educating communities about early cancer detection, we also provided information and resources about coronavirus disease 2019, including transmission mitigation, testing, and vaccination. CONCLUSIONS: Continuing to engage the communities in our study is critical to our long-term goal of eliminating cancer screening disparities in Southeast Asian immigrant communities.

The Ubuntu Approach in Project SOAR (Speaking Our African American Realities): Building a robust community-academic partnership and culturally curated focus groups.

Community-academic partnerships to enable research within minoritized communities are ever more important. Building on community-based participatory research frameworks, the Ubuntu Approach is offered as a set of principles for initiating and supporting meaningful and productive community-academic research partnerships. Particularly pertinent when the research is for and about systemically oppressed groups, the action principles are: 1) take risks; 2) identify and align core values; 3) create connection; 4) convey respect; 5) cultivate trust; and 6) put the work (i.e., benefit to the community) first, all of which are designed to create a culture for the partnership. These principles formed the foundation for the authors' community-academic partnership that resulted in Project SOAR (Speaking Our African American Realities), research to advance the understanding of the nature and consequences of the Strong Black Woman schema, and other culturally-relevant constructs, in the context of the breast cancer experience. Data from the first, qualitative phase of Project SOAR, in which 37 Black women diagnosed with breast cancer took part in culturally curated Gatherings (i.e., focus groups), provide evidence that steps toward the goal of benefiting the community were accomplished and that the Ubuntu Approach can be an effective method for community-academic partnerships.

Territórios rurais contra a Covid-19: saberes, fazeres e reflexões por meio da Educação Popular em Saúde / Territorios rurales contra la Covid-19: saberes, haceres y reflexiones a partir de la educación popular en salud / Rural territories against Covid-19: knowledge, actions and reflections from popular health education

Este artigo se apoia na sistematização de experiências de Oscar Jara para reconstruir os caminhos de uma pesquisa-ação participativa em saúde nas comunidades rurais com base em experiências de prevenção e cuidado à saúde no enfrentamento da Covid-19. Desde junho de 2020 temos desenvolvido experiências de Educação Popular em Saúde (EPS) no campo, pautadas pela pedagogia freiriana nos territórios do norte e na baixada litorânea do estado do Rio de Janeiro, especificamente áreas de reforma agrária vinculadas ao Movimento dos Trabalhadores Rurais Sem Terra; em um território quilombola; e em um coletivo de mulheres interligado à Articulação de Agroecologia Serramar. A análise dessas experiências aponta alternativas pedagógicas produzidas pelo encontro entre saberes acadêmicos e populares, buscando amparo na comunicação popular, no protagonismo das comunidades rurais, em especial de mulheres, como produtoras de conhecimento, práticas de cuidado e de resistência.(AU)

Este artículo se apoya en la sistematización de experiencias de Oscar Jara para reconstruir los caminos de una investigación-acción participativa en salud con comunidades rurales, a partir de experiencias de prevención y cuidado de la salud en el enfrentamiento de la Covid-19. Desde julio de 2020, desarrollamos experiencias de educación popular de salud en el campo basadas en la pedagogía de Paulo Freire con territorios del norte y en la región conocida como "Baixada" del Estado de Río de Janeiro, específicamente áreas de reforma agraria vinculadas al Movimiento de los Trabajadores Rurales Sin Tierra, un territorio quilombola y un colectivo de mujeres interconectado a la Articulación de Agroecología Serramar. El análisis de esas experiencias señala alternativas pedagógicas producidas a partir del encuentro entre saberes académicos y populares, buscando amparo en la comunicación popular, en el protagonismo de las comunidades rurales, en especial de mujeres, como productoras de conocimiento, prácticas de cuidado y resistencia.(AU)

This article is founded on the systematization of Oscar Jara's experiences to rebuild the paths of Participatory Action Research in Health in rural communities based on experiences of prevention and health care in coping with Covid-19. Since June 2020, we have been developing popular education experiences in rural health guided by Paulo Freire's pedagogy in northern territories and in the coastal lowlands of the state of Rio de Janeiro, specifically in areas of agrarian reform linked to the Landless Workers Movemen (MST); a quilombola territory; and a women's collective connected to the Working Group of Women of the Serramar Articulation of Agroecology (GT Mulheres Serramar). The analysis of these experiences points towards pedagogical alternatives produced from academic and popular knowledge, seeking support in popular communication, in the protagonism of rural communities, especially with regard to women as producers of knowledge, care practices and resistance.(AU)

Utilizing Participatory Research to Engage Underserved Populations to Improve Health-Related Outcomes in Delaware.

Cooperative Extension is a community outreach program. Despite its large reach, there is a need for the evaluation of changes in health-related outcomes for individuals engaged with Cooperative Extension. A team-based challenge was developed using community-engaged participatory research integrated with Cooperative Extension to encourage healthy eating and physical activity behaviors through Cooperative Extension programming. Thus, the primary purpose of this secondary analysis was to (1) evaluate changes in anthropometric outcomes and (2) evaluate changes in health behavior outcomes. Associations of anthropometric changes and health behavior changes with engagement in the three-month team-based challenge were explored. Anthropometrics were measured using standard procedures, and intake of fruits and vegetables and physical activity were self-reported. Of the 145 participants in the community-engaged participatory research portion of the study, 52.4% (n = 76) had complete anthropometrics before and after the team-based challenge and were included in this study. At 3 months, there was a significant reduction in body mass index (-0.3 kg/m2, p = 0.024) and no significant change in waist circumference (p = 0.781). Fruit and vegetable intake significantly increased (+0.44 servings/day, p = 0.018). Physical activity did not significantly change based on (1) the number of days 30 or more minutes of physical activity was conducted (p = 0.765) and (2) Godin Leisure-Time Exercise Questionnaire scores (p = 0.612). Changes in anthropometrics and health behaviors were not associated with engagement in the team-based challenge. Using community-engaged participatory research with community outreach programs, such as Cooperative Extension, can improve health-related outcomes in underserved populations. However, despite a participatory approach, changes in anthropometrics and health behaviors were not associated with engagement in the developed team-based challenge.

Development of Healthy Eating and Active Lifestyles for Diabetes, a culturally tailored diabetes self-management education and support programme for Black-British adults: A participatory research approach.

AIMS: To develop an evidence-based, culturally tailored, diabetes self-management education and support programme for Black-British adults, called Healthy Eating and Active Lifestyles for Diabetes (HEAL-D), using participatory methods to engage key stakeholders in the intervention design process. METHODS: Black-British adults living with type 2 diabetes, healthcare professionals and community leaders were engaged in an intervention development study. The intervention structure, format, content and delivery were developed through three phases of participatory research: Phase 1, formative research, involved focus groups and interviews; interactive co-development workshops were conducted in Phase 2; and Phase 3 focused on materials development. RESULTS: In Phase 1, focus groups and interviews identified the importance of nurturing collectivism, a reliance on informal sources of information/advice, barriers to attending appointments associated with competing priorities of work, travel and carer commitments, and a preference for directness and simple, clear advice/messages. A priority for healthcare professionals was the intervention embedding within current primary care structures and aligning with incentivised targets/metrics. Phase 2 (workshops) highlighted key requirements: avoidance of medical settings, appropriately trained and culturally knowledgeable educators, flexible appointments, preference for verbal and visual information and avoidance of technical/medical terminology. In Phase 3 (materials development), culturally sensitive videos, short films and information booklets were developed to convey educational messages, and food photography was used to provide culturally relevant dietary advice. CONCLUSIONS: Participatory methods provide a means to understand the needs of specific communities. This approach enables the development of healthcare interventions that are sensitive to the needs of service users and providers.

Knowledge on cervical cancer, attitude toward its screening, and associated factors among reproductive age women in Metu Town, Ilu Aba Bor, South West Ethiopia, 2018: community-based cross-sectional study.

BACKGROUND: Cervical cancer is one of the major public health problems worldwide. Lack of awareness and unavailability of screening services are the major factors that contribute to the problem of cervical cancer in Ethiopia. The community-based study conducted regarding the knowledge and attitude toward cervical cancer among women of reproductive age group is not enough to indicate the problem. AIM: To assess the knowledge on cervical cancer, attitude toward its screening, and associated factors among women of reproductive age. METHODS: A community-based cross-sectional study with a mixed approach method was conducted from April to May 2018. The sample size calculated for this study was 420. A systematic random sampling technique was used to select study participants. A binary logistic regression model was used to determine the association between the covariate and the dependent variable. RESULT: Of all participants, 31% have good knowledge of cervical cancer, and 57.8% have a positive attitude toward cervical cancer screening. In a multivariable analysis, educational status, occupation, visiting health facilities, and parity were significantly associated with knowledge and attitude toward cervical cancer screening. CONCLUSION: This study suggests increasing women's awareness, health education on cervical cancer in the community, and health institutions should be strengthened. PATIENT AND PUBLIC CONTRIBUTION: Female health workers were involved in the data collection process. Educated women and women who are community health leaders were involved as Interviewees for the qualitative part of the study. However, they have no direct contributions to authorship.

In pursuit of equity: partnering to improve breast and prostate cancer outcomes among African Americans.

PURPOSE: Community-based participatory research (CBPR) is a collaborative partnership approach that leverages the strengths of academic-community groups to address local problems. CBPR emphasizes equity (e.g., co-learning, power-sharing, participatory decision-making) among groups to achieve goals and promote sustainability. This study examines group dynamics, and their influence on achieving shared goals, within a CBPR-guided partnership established to improve breast and prostate cancer outcomes among underserved African American communities in St. Louis, Missouri. METHODS: We conducted in-person, semi-structured interviews with key academic and community informants and surveyed via email community collaborators involved in outreach activities. Interviews were audiotaped, transcribed, and independently coded by two authors using an iterative, open-coding process to identify major themes. Surveys were summarized using similar coding criteria for open-ended responses and descriptive statistics for discrete responses. Using a grounded theory approach, we summarized and compared themes from each data source to identify similarities and differences and triangulated results to generate overarching thematic findings. RESULTS: Participants described benefits from the partnership (funding; clinical, public health and evaluation expertise; training and networking opportunities) and found beneficial ways to leverage the partners' strengths in collaborating Participants expressed long-term commitment to sustaining the partnership and building capacity to address cancer disparities, but faced challenges related to power-sharing and participatory decision-making. CONCLUSIONS: Using CBPR to address cancer disparities is an effective approach to capacity-building and achieving shared goals. By evaluating the structures and processes within CBPR collaborations through the lens of equity, partners may identify and address challenges that threaten long-term partnership sustainability.

Community-based participatory design of a community health worker breast cancer training intervention for South Florida Latinx farmworkers.

OBJECTIVE: Community health worker (CHW)-led education is an important strategy to increase awareness and access to breast cancer screening in medically-underserved communities. This study aimed to develop a context-specific, culturally-appropriate training intervention for South Florida CHWs to educate Latinx immigrant farmworkers on breast cancer and early detection. METHODS: A community-based participatory research (CBPR) study, conducted 2017-2019, informed the design of a training curriculum for CHWs and educational dissemination materials. Twenty-two CHWs were trained and knowledge gains were measuring using a one-group pre-and post-test design. Triangulated evaluation consisted of field observations of CHW-client interactions, CHW self-reports, and rapid assessment surveys of community members. RESULTS: A community stakeholder-informed breast cancer training curriculum resulted in significant, sustained breast cancer knowledge gains among CHWs when comparing pre-, post-, and 4-6 month post-training follow-up test scores. Field observations of educational material dissemination, CHW self-reported evaluations, and community rapid assessment surveys at three health fairs demonstrated this was an effective strategy to engage female Latinx farmworkers in breast cancer education. CONCLUSIONS: Community and key stakeholder participation in the development of a breast cancer educational intervention allowed for tailored design priorities around knowledge-based content, comprehensiveness, relevance, appropriateness, and ease of dissemination to community members. This model of participatory CHW training intervention design can enable future train-the-trainer approaches to disseminate and scale-up evidence-based health education interventions.

Benefits of a Psychosocial Intervention on Positive Affect and Posttraumatic Growth for Chinese American Breast Cancer Survivors: A Pilot Study.

Breast cancer survivors report persistent psychological and physical symptoms, which affect their quality of life and may challenge the recovery process. Due to social, cultural, and linguistic barriers, culturally sensitive care is largely unavailable for Chinese Americans, and their psychological needs are not often addressed. We aimed to investigate whether the Joy Luck Academy (JLA), a psychosocial intervention providing both information and peer support, was associated with positive adjustment among Chinese American breast cancer survivors. Thirty-nine Chinese American breast cancer survivors participated in a pilot psychosocial intervention. The educational materials and lectures were delivered in the participants' native language of Chinese. All of the educators and mentors shared the same linguistic and cultural background with the participants. The program utilized a community-based participatory research (CBPR) approach to further enhance the cultural sensitivity of the intervention. Participants' post-traumatic growth and positive affect were assessed before and after the intervention. The JLA showed an improvement in positive affect, and they had a greater appreciation for life. The intervention was found to be feasible, well-accepted, and beneficial for this population. Chinese American breast cancer survivors reported improved psychological health after attending the intervention. These findings encourage the development and implementation of psychosocial interventions for Chinese breast cancer survivors. Similar programs could be integrated into other ethnic or cultural communities.

Challenges of developing a district child welfare plan in South Africa: lessons from a community-engaged HIV/AIDS research project.

The Amajuba Child Health and Wellbeing Research Project measured the impact of orphaning due to HIV/AIDS on South African households between 2004 and 2007. Community engagement was a central component of the project and extended through 2010. We describe researcher engagement with the community to recruit participants, build local buy-in, stimulate interest in study findings, and promote integration of government social welfare services for families and children affected by HIV/AIDS. This narrative documents the experience of researchers, drawing also on project reports, public documents, and published articles, with the objective of documenting lessons learned in this collaboration between researchers from two universities and a community in South Africa during a period that spanned seven years. This experience is then analyzed within the context of an applied research, community-engagement framework.

Youth Participatory Action Research for Youth Substance Use Prevention: A Systematic Review.

Background: A growing body of research points to the efficacy of participatory methods in decreasing rates of alcohol, tobacco, and other drug use and other risky behaviors among youth. However, to date, no systematic review of the literature has been conducted on Youth Participatory Action Research (YPAR) for youth substance use prevention. This review draws on the peer-reviewed literature on YPAR in the context of youth substance use prevention published from January 1, 1998 through April 30, 2018. Methods: We summarize (1) the published evidence regarding YPAR for youth substance use prevention; (2) the level of youth engagement in the research process; (3) the methodologies used in YPAR studies for youth substance use prevention; and (4) where more research is needed. We used Reliability-Tested Guidelines for Assessing Participatory Research Projects to assess the level of youth engagement in the research process. Results: In all, we identified 15 unduplicated peer-reviewed, English-language articles that referenced YPAR, Community Based Participatory Research, youth, and substance use prevention. Conclusions: Our findings indicated that youth participation in research and social action resulted in increased community awareness of substance use and related solutions. This supports the premise of youth participation as an agent of community change by producing community-specific substance use data and prevention materials. Identified weaknesses include inconsistent levels of youth engagement throughout the research process, a lack of formalized agreements between youth and researchers with regard to project and data management, and a lack of outcome evaluation measures for assessing YPAR for youth substance use prevention.

A community-based lung cancer rapid tissue donation protocol provides high-quality drug-resistant specimens for proteogenomic analyses.

BACKGROUND: For the advancement of cancer research, the collection of tissue specimens from drug-resistant tumors after targeted therapy is crucial. Although patients with lung cancer are often provided targeted therapy, post-therapy specimens are not routinely collected due to the risks of collection, limiting the study of targeted therapy resistance mechanisms. Posthumous rapid tissue donation (RTD) is an expedient collection process that provides an opportunity to understand treatment-resistant lung cancers. METHODS: Consent to participate in the thoracic RTD protocol was obtained during patient care. When death occurred, tumor and paired non-tumor, cytology, and blood specimens were collected within 48 hours and preserved as formalin-fixed and frozen specimens. Tissue sections were evaluated with hematoxylin and eosin staining and immunohistochemistry (IHC) against multiple biomarkers, including various programmed death ligand 1 (PD-L1) clones. Next-generation sequencing was performed on 13 specimens from 5 patients. RESULTS: Postmortem specimens (N = 180) were well preserved from 9 patients with lung cancer. PD-L1 IHC revealed heterogeneity within and between tumors. An AGK-BRAF fusion was newly identified in tumor from a donor with a known echinoderm microtubule-associated protein-like 4 to anaplastic lymphoma kinase (EML4-ALK) fusion and history of anaplastic lymphoma kinase (ALK) inhibitor therapy. RNA expression analysis revealed a clonal genetic origin of metastatic cancer cells. CONCLUSIONS: Post-therapy specimens demonstrated PD-L1 heterogeneity and an acyl glycerol kinase to B-rapidly accelerated fibrosarcoma (AGK-BRAF) fusion in a patient with an EML4-ALK-positive lung adenocarcinoma as a potential resistance mechanism to ALK inhibitor therapy. Rapid tissue donation collection of postmortem tissue from lung cancer patients is a novel approach to cancer research that enables studies of molecular evolution and drug resistance.

Inserção de um grupo virtual na rede social de apoio ao aleitamento materno exclusivo de mulheres após a alta hospitalar / Inclusion of a virtual group in a social support network to exclusive breastfeeding after hospital discharge / Inserción de un grupo virtual en la red social de apoyo a la lactancia materna exclusiva de mujeres después de recibir el alta del hospital

Apesar dos benefícios do aleitamento materno exclusivo para a saúde materno-infantil, sua interrupção precoce ainda é muito frequente. O período após a alta hospitalar é o momento em que a mulher se depara com a maioria das dificuldades, sendo importante fortalecer as ações de apoio à amamentação. Este trabalho teve por objetivo desvelar as contribuições da inserção de uma comunidade virtual na rede social de apoio ao aleitamento materno exclusivo de mulheres após a alta hospitalar. Trata-se de um estudo qualitativo, realizado em um grupo privado da rede social Facebook, gerenciado por profissionais de saúde, utilizando-se como referencial metodológico a Pesquisa Participativa Baseada na Comunidade. O grupo foi um instrumento de promoção de diálogo e interação entre mulheres a partir de experiências contextualizadas com a realidade, propiciando a construção de novas relações interpessoais e ampliando suas redes sociais de apoio.(AU)

Despite the health benefits of exclusive breastfeeding to moms and their children, its early interruption is still quite common. After hospital discharge is the period when women face the most challenges, being important to strengthen breastfeeding support actions. This study aimed at unveiling the contributions of including a virtual community in a social support network to exclusive breastfeeding after hospital discharge. This qualitative study was conducted in a private Facebook group managed by health professionals using a Community-Based Participatory Research as methodological reference. The group was used to foster dialog and interaction among women based on experiences contextualized in the real world, being possible to build new interpersonal relationships and expand their support networks.(AU)

A pesar de los beneficios de la lactancia materna exclusiva para la salud materno-infantil, su interrupción precoz todavía es muy frecuente. El período después de recibir el alta en el hospital es el momento en el que la mujer se depara con la mayoría de las dificultades, siendo importante fortalecer las acciones de apoyo a la lactancia. Este trabajo tuvo el objetivo de desvelar las contribuciones de la inserción de una comunidad virtual en la red social de apoyo a la lactancia materna exclusiva de mujeres después de recibir el alta del hospital. Se trata de un estudio cualitativo, realizado en un grupo privado de la red social facebook, administrado por profesionales de la salud, utilizando como referencial metodológico la Encuesta Participativa Basada en la Comunidad. El grupo fue un instrumento de promoción de diálogo e interacción entre mujeres a partir de experiencias contextualizadas con la realidad, propiciando la construcción de nuevas relaciones interpersonales, ampliando sus redes sociales de apoyo.(AU)

Reaching for a Healthier Lifestyle: A Photovoice Investigation of Healthy Living in People with Serious Mental Illness.

BACKGROUND: People with mental illness in the United States are almost twice as likely to be obese compared with those without a mental illness. Lifestyle factors, such as poor dietary choices and physical inactivity, are often cited as causes of obesity in this population, which limits the response to the obesity epidemic primarily to behavioral change interventions. In response, this project is grounded in a human rights framework to assure that the people most affected by the problem are included in understanding and addressing the problem. We sought to investigate social and structural factors that affect weight loss in partnership with community co-researchers enrolled in a group lifestyle program for overweight/obese people with serious mental illness (SMI) living in supportive housing settings. METHODS: Using Photovoice methodology, eight co-researchers identified barriers and facilitators to healthy living in their community over seven weekly sessions. RESULTS: Co-researchers selected 33 photos reflecting two overarching themes: 1) structural barriers, such as poor-quality food, high transportation costs, limited SNAP benefits, limits of food pantries, easy availability of tobacco and alcohol products, and limited places for exercise and 2) strategies for overcoming structural barriers. CONCLUSIONS: Co-researchers highlighted structural barriers that were a cause or consequence of food insecurity and situations that threaten the right to healthy food and opportunities for a healthy life. Co-researchers reported examples of knowledge and skills they learned through participation in the project that were used to overcome structural barriers to healthy eating and physical activity, and likely contributed to weight loss.

Adaptation of an Evidence-Based Cardiovascular Health Intervention for Rural African Americans in the Southeast.

BACKGROUND: African Americans (AA) living in the southeast United States have the highest prevalence of cardiovascular diseases (CVD) and rural minorities bear a significant burden of co-occurring CVD risk factors. Few evidence-based interventions (EBI) address social and physical environmental barriers in rural minority communities. We used intervention mapping together with community-based participatory research (CBPR) principles to adapt objectives of a multi-component CVD lifestyle EBI to fit the needs of a rural AA community. We sought to describe the process of using CPBR to adapt an EBI using intervention mapping to an AA rural setting and to identify and document the adaptations mapped onto the EBI and how they enhance the intervention to meet community needs. METHODS: Focus groups, dyadic interviews, and organizational web-based surveys were used to assess content interest, retention strategies, and incorporation of auxiliary components to the EBI. Using CBPR principles, community and academic stakeholders met weekly to collaboratively integrate formative research findings into the intervention mapping process. We used a framework developed by Wilstey Stirman et al. to document changes. RESULTS: Key changes were made to the content, context, and training and evaluation components of the existing EBI. A matrix including behavioral objectives from the original EBI and new objectives was developed. Categories of objectives included physical activity, nutrition, alcohol, and tobacco divided into three levels, namely, individual, interpersonal, and environmental. CONCLUSIONS: Intervention mapping integrated with principles of CBPR is an efficient and flexible process for adapting a comprehensive and culturally appropriate lifestyle EBI for a rural AA community context.

Development and Evaluation of a Training Program for Community-Based Participatory Research in Breast Cancer.

This paper describes the development and feasibility of the Community Based Research Infrastructure to Better Science (CRIBS) training. The goal of this training program was to help new or existing community-academic teams to build strong partnerships and successfully develop together fundable research projects focused on breast cancer environmental causes and disparities. A comprehensive mixed-methods participatory approach was utilized to assess the training. Twenty-two community-academic teams applied for the training program; twelve teams were enrolled. All teams completed the training and subsequently submitted research applications for funding. All components of the training received high ratings and positive qualitative comments. Self-rated competency in all of the learning domains increased during the training. Four (33%) of teams were successful in their first attempt to garner research funding, and six (50%) were eventually successful. The evaluation of CRIBS found it to have successfully achieved all four goals of the training: (1) Twelve new CBPR (community-based participatory research) teams, (2) improved knowledge about CBPR and science, (3) twelve submitted grant proposals in the first year, and (4) six (50%) successfully funded research projects.

Understanding Multilevel Factors Related to Urban Community Trust in Healthcare and Research.

BACKGROUND: Community and patient engagement in the healthcare system and biomedical research are prerequisites for eliminating health disparities. We conducted a "listening tour" to enhance our understanding of multilevel factors associated with community trust. METHODS: Using community-based participatory research (CBPR) methods, we conducted a phenomenological qualitative study. "Town-hall" style discussions were held at nine sites across an urban, Midwestern city. We recruited adults (N = 130) via community networks, social media, flyers, and word-of-mouth. Demographic assessments were self-administered and listening tour sessions were conducted by trained moderators. Themes were framed within the social ecological model (SEM; intrapersonal, interpersonal, institutional, community, and policy levels). RESULTS: Participants were mostly female (68%), African American (80%), had health coverage (97%) and were diagnosed with a chronic health condition (71%). The overarching theme was sociodemographic differences in distrust, such that African Americans and deaf/hearing impaired participants perceived disparities in healthcare, a lower quality of care, and skepticism about biomedical research, relative to Whites. CONCLUSIONS: The depth of distrust for healthcare providers, systems, and researchers in underserved communities remains strong and complex. Findings highlight the need to understand the lived experiences of community members, and how distrust is maintained. Multilevel interventions to increase trust and the accrual of underrepresented populations into clinical trials are needed.