'It's like you don't have a roadmap really': using an antiracism framework to analyze patients' encounters in the cancer system.

Background: Cancer patients can experience healthcare system-related challenges during the course of their treatment. Yet, little is known about how these challenges might affect the quality and completion of cancer treatment for all patients, and particularly for patients of color. Accountability for Cancer Care through Undoing Racism and Equity is a multi-component, community-based participatory research intervention to reduce Black-White cancer care disparities. This formative work aimed to understand patients' cancer center experiences, explore racial differences in experiences, and inform systems-level interventions.Methods: Twenty-seven breast and lung cancer patients at two cancer centers participated in focus groups, grouped by race and cancer type. Participants were asked about what they found empowering and disempowering regarding their cancer care experiences. The community-guided analysis used a racial equity approach to identify racial differences in care experiences.Results: For Black and White patients, fear, uncertainty, and incomplete knowledge were disempowering; trust in providers and a sense of control were empowering. Although participants denied differential treatment due to race, analysis revealed implicit Black-White differences in care.Conclusions: Most of the challenges participants faced were related to lack of transparency, such that improvements in communication, particularly two-way communication could greatly improve patients' interaction with the system. Pathways for accountability can also be built into a system that allows patients to find solutions for their problems with the system itself. Participants' insights suggest the need for patient-centered, systems-level interventions to improve care experiences and reduce disparities.

Using Concept Mapping to Explore and Engage Parent and Youth Residents of an Economically Underserved Minority Community around Children's Asthma.

BACKGROUND: Asthma continues to disproportionately impact children living in economically underserved urban neighborhoods, and contributes to persistent racial and economic disparities in health. Furthermore, asthma is often exacerbated by the presence of social and environmental factors that are prevalent in, and sometimes particular to, these communities. OBJECTIVES: The present study uses a community-based participatory research (CBPR) approach to explore and define the experience and issues around children's asthma in an economically underserved community. These findings will be used to inform the design of a community intervention. METHODS: Through a community and academic partnership called Healthy Living, Healthy Learning, Healthy Lives (HL3), we engaged neighborhood youth and adult residents (N = 21) in a concept mapping activity to identify triggers and health care-related factors that influence children with asthma. RESULTS: Findings highlight that the most important triggers of asthma included indoor and outdoor irritants and allergens, as well as violence and fear-related emotions. The most important factors perceived to influence the care of asthma included medical relievers such as asthma medication, appliances such as a humidifier, and supports for asthma like the school nurse. Differences between adults and youth perceptions of factors triggering and influencing asthma are highlighted. CONCLUSIONS: Engaging community residents as experts provided a deeper understanding of the issues around children's asthma in the community, which can contribute to the design of a more effective intervention.

Community Partnered Research Ethics Training in Practice: A Collaborative Approach to Certification.

This report describes the development and implementation of a tailored research ethics training for academic investigators and community research partners (CRP). The Community Partnered Research Ethics Training (CPRET) and Certification is a free and publicly available model and resource created by a university and community partnership to ensure that traditional and non-traditional research partners may study, define, and apply principles of human subjects' research. To date, seven academic and 34 CRP teams have used this highly interactive, engaging, educational, and relationship building process to learn human subjects' research and be certified by the University of Pittsburgh Institutional Review Board (IRB). This accessible, flexible, and engaging research ethics training process serves as a vehicle to strengthen community and academic partnerships to conduct ethical and culturally sensitive research.

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.

Identifying Perceived Neighborhood Stressors Across Diverse Communities in New York City.

There is growing interest in the role of psychosocial stress in health disparities. Identifying which social stressors are most important to community residents is critical for accurately incorporating stressor exposures into health research. Using a community-academic partnered approach, we designed a multi-community study across the five boroughs of New York City to characterize resident perceptions of key neighborhood stressors. We conducted 14 community focus groups; two to three in each borough, with one adolescent group and one Spanish-speaking group per borough. We then used systematic content analysis and participant ranking data to describe prominent neighborhood stressors and identify dominant themes. Three inter-related themes regarding the social and structural sources of stressful experiences were most commonly identified across neighborhoods: (1) physical disorder and perceived neglect, (2) harassment by police and perceived safety and (3) gentrification and racial discrimination. Our findings suggest that multiple sources of distress, including social, political, physical and economic factors, should be considered when investigating health effects of community stressor exposures and psychological distress. Community expertise is essential for comprehensively characterizing the range of neighborhood stressors that may be implicated in psychosocial exposure pathways.

Enhancing dissemination and implementation research using systems science methods.

BACKGROUND: Dissemination and implementation (D&I) research seeks to understand and overcome barriers to adoption of behavioral interventions that address complex problems, specifically interventions that arise from multiple interacting influences crossing socio-ecological levels. It is often difficult for research to accurately represent and address the complexities of the real world, and traditional methodological approaches are generally inadequate for this task. Systems science methods, expressly designed to study complex systems, can be effectively employed for an improved understanding about dissemination and implementation of evidence-based interventions. PURPOSE: The aims of this study were to understand the complex factors influencing successful D&I of programs in community settings and to identify D&I challenges imposed by system complexity. METHOD: Case examples of three systems science methods-system dynamics modeling, agent-based modeling, and network analysis-are used to illustrate how each method can be used to address D&I challenges. RESULTS: The case studies feature relevant behavioral topical areas: chronic disease prevention, community violence prevention, and educational intervention. To emphasize consistency with D&I priorities, the discussion of the value of each method is framed around the elements of the established Reach Effectiveness Adoption Implementation Maintenance (RE-AIM) framework. CONCLUSION: Systems science methods can help researchers, public health decision makers, and program implementers to understand the complex factors influencing successful D&I of programs in community settings and to identify D&I challenges imposed by system complexity.

Intimate partner violence victims as mothers: their messages and strategies for communicating with children to break the cycle of violence.

Children whose mothers are victims of intimate partner violence (IPV) are at increased risk of adverse health and psychosocial consequences, including becoming victims or perpetrators of violence in their own relationships. This study aimed to understand the role mothers may play in preventing the perpetuation of violence in their children's lives. We performed semistructured interviews with 18 IPV victims who are mothers and were living at the Women's Center & Shelter of Greater Pittsburgh from July through November 2011. We sought to understand how they communicate with their children about IPV and relationships. These mothers described a desire to explain their IPV experience and offer advice about avoiding violence in relationships. As foundations for these discussions, they emphasized the importance of close relationships and open communication with their children. Although mothers are interested in talking about IPV and relationships and identify communication strategies for doing so, many have never discussed these topics with their children. These mothers need and want an intervention to help them learn how to communicate with their children to promote healthy relationships. Development of a program to facilitate communication between IPV victims and their children could create an important tool to empower mothers to break the cross-generational cycle of domestic violence.

Associations between race, ethnicity, religion, and waterpipe tobacco smoking.

We surveyed a random sample of 852 students at a large university in 2010-2011 to clarify associations between waterpipe tobacco smoking (WTS), ethnicity, and religion. Current (past 30 day) WTS was reported by 116 (14%) students, and 331 (39%) reported ever WTS. Middle Eastern ethnicity was associated with current WTS (odds ratio [OR] = 2.37; 95% confidence interval [CI] = 1.06, 5.34) and ever WTS (OR = 2.59; 95% CI = 1.22, 5.47). South Asian ethnicity was associated with lower odds for ever WTS (OR = 0.42; 95% CI = 0.21, 0.86), but there was no significant association between South Asian ethnicity and current WTS. Being an atheist and having lower religiosity were associated with both WTS outcomes.

Exploring the impact of a community hospital closure on older adults: a focus group study.

The closing of hospitals has exacerbated challenges for older adults in accessing healthcare, especially those living in economically underserved settings. Through focus groups and a community-engaged approach, our study examined and documented the emergent health needs of older adults following the closing of a local hospital in an economically disadvantaged community. Focus groups were reconvened to assess progress and health needs over time. Analyses of the focus groups (n=37, mean age 77, 84% female) illustrated the impact of the closure and the emergence of the following dominant themes: perceptions of the hospital system, including feelings of abandonment and social isolation; transportation challenges in accessing health care resources; and lack of knowledge and literacy regarding available health care and obtaining health services. Discussion sessions with hospital administrators and participants afforded an opportunity for sharing data and additional assessment. The data and relationships developed with community participants and health system representatives resulted in the production of an information resource about access to health services, tailored for older adults.

PCOR, CER, and CBPR: alphabet soup or complementary fields of health research?

Comparative effectiveness research (CER) and community- based participatory research (CBPR) are two fields of research that do not have a history of strong collaboration. However, CER and CBPR researchers could benefit from interdisciplinary collaboration to design and implement relevant, timely, action-oriented research. This commentary explores field-specific definitions of stakeholders and then outlines various roles stakeholders might play within grant-funded research. Questions such as "What stakeholders should be involved?" and "How are stakeholders involved?" are addressed. The goal of this commentary is to highlight how the expertise and experiences of CBPR investigators can enhance the field of CER and to describe strategies for encouraging stakeholder involvement in CER research through the lens of CBPR. It is recommended that a team-based approach to conducting stakeholder-engaged CER encourages multiple stakeholders and "end users" to contribute their diverse expertise to the research process and contributes to the development of research with an increased likelihood of improving patient health and healthcare.

Dynamic simulation of crime perpetration and reporting to examine community intervention strategies.

OBJECTIVE: To develop a conceptual computational agent-based model (ABM) to explore community-wide versus spatially focused crime reporting interventions to reduce community crime perpetrated by youth. METHOD: Agents within the model represent individual residents and interact on a two-dimensional grid representing an abstract nonempirically grounded community setting. Juvenile agents are assigned initial random probabilities of perpetrating a crime and adults are assigned random probabilities of witnessing and reporting crimes. The agents' behavioral probabilities modify depending on the individual's experience with criminal behavior and punishment, and exposure to community crime interventions. Cost-effectiveness analyses assessed the impact of activating different percentages of adults to increase reporting and reduce community crime activity. Community-wide interventions were compared with spatially focused interventions, in which activated adults were focused in areas of highest crime prevalence. RESULTS: The ABM suggests that both community-wide and spatially focused interventions can be effective in reducing overall offenses, but their relative effectiveness may depend on the intensity and cost of the interventions. Although spatially focused intervention yielded localized reductions in crimes, such interventions were shown to move crime to nearby communities. Community-wide interventions can achieve larger reductions in overall community crime offenses than spatially focused interventions, as long as sufficient resources are available. CONCLUSION: The ABM demonstrates that community-wide and spatially focused crime strategies produce unique intervention dynamics influencing juvenile crime behaviors through the decisions and actions of community adults. It shows how such models might be used to investigate community-supported crime intervention programs by integrating community input and expertise and provides a simulated setting for assessing dimensions of cost comparison and intervention effect sustainability. ABM illustrates how intervention models might be used to investigate community-supported crime intervention programs.

Critical incident technique: an innovative participatory approach to examine and document racial disparities in breast cancer healthcare services.

Disproportionate and persistent inequities in quality of healthcare have been observed among persons of color in the United States. To understand and ultimately eliminate such inequities, several public health institutions have issued calls for innovative methods and approaches that examine determinants from the social, organizational and public policy contexts to inform the design of systems change interventions. The authors, including academic and community research partners in a community-based participatory research (CBPR) study, reflected together on the use and value of the critical incident technique (CIT) for exploring racial disparities in healthcare for women with breast cancer. Academic and community partners used initial large group discussion involving a large partnership of 35 academic and community researchers guided by principles of CBPR, followed by the efforts of a smaller interdisciplinary manuscript team of academic and community researchers to reflect, document summarize and translate this participatory research process, lessons learned and value added from using the CIT with principles of CBPR and Undoing Racism. The finding of this article is a discussion of the process, strengths and challenges of utilizing CIT with CBPR. The participation of community members at all levels of the research process including development, collection of the data and analysis of the data was enhanced by the CIT process. As the field of CBPR continues to mature, innovative processes which combine the expertise of community and academic partners can enhance the success of such partnerships. This report contributes to existing literature by illustrating a unique and participatory research application of CIT with principles of CBPR and Undoing Racism. Findings highlight the collaborative process used to identify and implement this novel method and the adaptability of this technique in the interdisciplinary exploration of system-level changes to understand and address disparities in breast cancer and cancer care.

Translating community-based participatory research principles into practice.

BACKGROUND: Although academics are trained in research methods, few receive formal training in strategies for implementing equitable community engaged research. Academics and their community partners can benefit from such direction and assistance as they establish and maintain community-based participatory research (CBPR) partnerships. Research partners from the University of Pittsburgh, the Johns Hopkins Center for Injury Research and Policy, and the House of Ruth Maryland, one of the nation's leading domestic violence centers serving Baltimore and the surrounding areas, joined together to design, implement, and evaluate a series of activities to increase local CPBR capacity. OBJECTIVES: This article provides an overview of process and findings from two CBPR workshops jointly held for academic and community members and explores specific suggestions from the workshop participants about how to put the CBPR principles into practice to promote community engaged research to address intimate partner violence (IPV). METHODS: Twenty-four academic and community partners with experience addressing IPV participated in the two workshops. Facilitators led discussions based on the core CPBR principles. Participants were asked to interpret those principles, identify actions that could help to put the principles into practice, and discuss challenges related to CBPR approaches for IPV research. Observational notes and transcripts of the discussions and workshop evaluations are summarized. RESULTS: The CBPR principles were interpreted and revised through consensus into common language that reflected the group discussion of the core CBPR principles. Workshop participants provided a range of actions for putting the principles into practice and identified the need for sensitivity in relation to IPV research. A majority of participants felt that the workshop generated novel ideas about how they could use CPBR in their own work. CONCLUSIONS: Translating CBPR principles into common, action-oriented language is a useful first step when building a new academic-community research partnership.

Depressive symptomatology, quality of life and disease control among individuals with well-characterized severe asthma.

OBJECTIVES: A thorough examination of the relationship of asthma severity and control with symptoms of depression is needed to identify groups of asthmatics at high risk for poor disease control outcomes. This study examines the relationship of symptoms of depression with severity and control in a well-characterized cohort of asthmatics and healthy controls. METHODS: Depressive symptoms and quality of life were assessed using the Beck Depression Inventory. Disease control was measured by a composite index incorporating symptoms, activity limitation and rescue medication use. RESULTS: Individuals with asthma (n = 91) reported more symptoms of depression than controls (n = 36; p < 0.001). Those with severe asthma (n = 49) reported more symptoms of depression (p = 0.002) and poorer asthma control (p < 0.0001) than those with not severe asthma. Worse asthma control was associated with more depressive symptoms in severe (r = 0.46, p = 0.002) but not in not severe (r = 0.13, p = 0.40) asthmatics. The relationship of symptoms of depression among severe asthmatics was attenuated by disease control. Exploratory analyses identified specific disease symptom characteristics, as opposed to exacerbations, as associated with symptoms of depression. CONCLUSIONS: Among individuals with severe asthma, increased symptom burden is positively associated with risk for co-morbid depression. These findings point to a need for regular mood disorder screenings and treatment referrals among this group. Further research is warranted to examine whether treatment of comorbid depression improves treatment adherence and asthma-related quality of life.

Visual voices: a participatory method for engaging adolescents in research and knowledge transfer.

Integrating the expertise and perspectives of adolescents in the process of generating and translating research knowledge into practice is often missed, yet is essential for designing and implementing programs to promote adolescent health. This paper describes the use of the arts-based participatory Visual Voices method in translational research. Visual Voices involves systematic creative writing, drawing, and painting activities to yield culturally relevant information which is generated by and examined with adolescents. Qualitative data products include the created artistic products and transcripts from group discussions of the content developed and presented. Data are analyzed and compared across traditional (e.g., transcripts) and nontraditional (e.g., drawings and paintings) media. Findings are reviewed and interpreted with participants and shared publicly to stimulate community discussions and local policy and practice changes. Visual Voices is a novel method for involving adolescents in translational research though Integrated Knowledge Transfer (IKT), a process for bringing researchers and stakeholders together from the stage of idea generation to implementing evidence-based initiatives.

A qualitative exploration of the role of social networks in educating urban African American adolescents about sex.

OBJECTIVE: To explore social network members' role in educating African American adolescents about sexual health issues. DESIGN: We conducted 21 focus groups with urban African American mothers (n=51), fathers (n=18), sons (n=20), and daughters (n=36) from Allegheny County, Pennsylvania, USA, between December 2007 and March 2008. At least one biological parent (or legal guardian) and one adolescent aged 15-17 years from each family participated. Group conversations were audio-recorded, transcribed, and analyzed using directive content analysis and the constant comparison method. Two coders independently read each transcript to identify emergent themes. RESULTS: A broad range of people were reportedly involved in the education process. Older siblings, extended family, and peers were most commonly cited. However, unrelated adults were also described as playing important roles. Unrelated adults included the friends of an adolescent's parents and the parents of an adolescent's friends or romantic partners. Social network members were said to address three main issues: the facts about sex and sexuality, the social aspects of sexuality (e.g., appropriate dating behaviors, choosing dating partners), and promotion of family values. When educating adolescents about sex, social network members were described as playing eight functional roles, including that of a teacher, guide, challenger, confidant, shelterer, supervisor-chaperone, role model, and provider of access to reproductive health services. These roles were not mutually exclusive, meaning that social network members often assumed different roles depending on the situation. The influence of individuals who were not an adolescent's parent was highly dependent on adolescents' relationship with their parents or on their parents' comfort dealing with sexual issues. CONCLUSIONS: African American adolescents' social networks were described by parents and adolescents as dense, complex, and routinely involved in educating adolescents about sex.

Standing orders for influenza and pneumococcal polysaccharide vaccination: correlates identified in a national survey of U.S. Primary care physicians.

BACKGROUND: Standing orders programs (SOPs) allow non-physician medical staff to assess eligibility and administer vaccines without a specific physician's order. SOPs increase vaccination rates but are underutilized. METHOD: In 2009, correlates of SOPs use for influenza vaccine and pneumococcal polysaccharide vaccination (PPV) were assessed in a nationally representative, stratified random sample of U.S. physicians (n = 880) in family and internal medicine who provided office immunization. The response rate was 67%. Physicians reporting no SOPs, only influenza SOPs, and joint influenza and PPV SOPs were compared using multinomial and logistic regression models to examine individual and practice-level correlates. RESULTS: 23% reported using SOPs consistently for both influenza vaccine and PPV, and 20% for influenza vaccination only, with the remainder not using SOPs. Practice-level factors that distinguished practices with joint influenza-PPV SOPs included perceived practice openness to change, strong practice teamwork, access to an electronic medical record, presence of an immunization champion in the practice, and access to nurse/physician assistant staff as opposed to medical assistants alone. DISCUSSION: Physicians in practices with SOPs for both vaccines reported greater awareness of ACIP recommendations and/or Medicare regulations and were more likely to agree that SOPs are an effective way to boost vaccination coverage. However, implementation of both influenza and PPV SOPs was also associated with a variety of practice-level factors, including teamwork, the presence of an immunization champion, and greater availability of clinical assistants with advanced training. CONCLUSIONS: Practice-level factors are critical for the adoption of more complex SOPs, such as joint SOPs for influenza and PPV.