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.

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.

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.

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.

Aligning the goals of community-engaged research: why and how academic health centers can successfully engage with communities to improve health.

Community engagement (CE) and community-engaged research (CEnR) are increasingly viewed as the keystone to translational medicine and improving the health of the nation. In this article, the authors seek to assist academic health centers (AHCs) in learning how to better engage with their communities and build a CEnR agenda by suggesting five steps: defining community and identifying partners, learning the etiquette of CE, building a sustainable network of CEnR researchers, recognizing that CEnR will require the development of new methodologies, and improving translation and dissemination plans. Health disparities that lead to uneven access to and quality of care as well as high costs will persist without a CEnR agenda that finds answers to both medical and public health questions. One of the biggest barriers toward a national CEnR agenda, however, are the historical structures and processes of an AHC-including the complexities of how institutional review boards operate, accounting practices and indirect funding policies, and tenure and promotion paths. Changing institutional culture starts with the leadership and commitment of top decision makers in an institution. By aligning the motivations and goals of their researchers, clinicians, and community members into a vision of a healthier population, AHC leadership will not just improve their own institutions but also improve the health of the nation-starting with improving the health of their local communities, one community at a time.

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.

Psychosocial stress and asthma morbidity.

PURPOSE OF REVIEW: The objective of this review is to provide an overview and discussion of recent epidemiologic and mechanistic studies of stress in relation to asthma incidence and morbidity. RECENT FINDINGS: Recent findings suggest that stress, whether at the individual (i.e. epigenetics, perceived stress), family (i.e. prenatal maternal stress, early-life exposure, or intimate partner violence) or community (i.e. neighborhood violence; neighborhood disadvantage) level, influences asthma and asthma morbidity. Key recent findings regarding how psychosocial stress may influence asthma through Posttraumatic Stress Disorder, prenatal and postnatal maternal/caregiver stress, and community violence and deprivation are highlighted. SUMMARY: New research illustrates the need to further examine, characterize, and address the influence of social and environmental factors (i.e. psychological stress) on asthma. Further, research and innovative methodologies are needed to characterize the relationship and pathways associated with stress at multiple levels to more fully understand and address asthma morbidity, and to design potential interventions, especially to address persistent disparities in asthma in ethnic minorities and economically disadvantaged communities.

Examining structural and clinical factors associated with implementation of standing orders for adult immunization.

A proven method to increase vaccination rates in primary care is a standing orders program (SOP) for nonphysician staff to assess and vaccinate eligible individuals without a specific written physician order. This study describes a mixed methods approach to examining physicians' beliefs and attitudes about and adoption of SOPs for adult immunizations, specifically, influenza and pneumococcal polysaccharide vaccine. Focus groups and in-depth interviews of physicians, nurses, practice managers, and the medical director of a managed care health plan were conducted. Results were used to enrich a concise survey based on the Awareness-to-Adherence model of physician behavior and previous research, which was mailed to 1,640 general internists and family physicians nationwide. Barriers to SOPs identified through qualitative methods were lack of interest in changing the status quo, a physician-dominated hierarchy, and fear of malpractice. Facilitators included having an electronic medical record and a practice culture that was open to change. The survey (response rate 67%) confirmed the facilitators and further identified patient, physician, and practice factors that served as barriers to establishing and maintaining SOPs. This mixed methods approach provided the opportunity to develop a tailored and practice-oriented survey for examining the contextual factors influencing clinical providers' decisions to implement SOPs for adult immunization.

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.

Use of standing orders for adult influenza vaccination a national survey of primary care physicians.

BACKGROUND: Influenza vaccination of adults remains below recommended levels. Standing orders programs (SOPs) that allow nonphysician medical staff to assess eligibility and administer vaccines without an individualized physician's order are a proven method to increase vaccination rates. However, recent data on their use are not available. PURPOSE: Investigators surveyed primary care physicians nationwide in 2009 to assess factors related to awareness and use of SOPs. METHODS: Using the AMA Master List, a stratified random sample of U.S. family physicians (n=820) and general internists (n=820) was selected to receive a mailed questionnaire. The inclusion criterion was providing primary care to adults in an office-based practice. The primary outcome measure, analyzed in 2010, was consistent use of SOPs. RESULTS: The survey response rate was 67% (1015/1517). Forty-two percent of respondents who immunized adults in their practices reported consistent use of SOPs. Those physicians differed in several dimensions, including awareness of recommendations and regulations regarding SOPs for vaccines, size and type of practice, number and level of training of clinical staff, attributes of the staff. The two variables in logistic regression models that were associated with the highest likelihood of using SOPs were awareness of recommendations to use them (OR=3.0; 95% CI=2.2, 4.1) and agreement with their effectiveness (OR=2.7, 95% CI=1.9, 3.8). CONCLUSIONS: Fewer than half of physicians report using SOPs for influenza vaccination, a number that is not much higher than it was about a decade ago. Approaches to increase use of SOPs are needed.

Intimate partner violence among HIV-positive persons in an urban clinic.

While the intersection of HIV/AIDS and intimate partner violence (IPV) has gained increased attention, little focus has been given to the relationship among minority men and men who have sex with men (MSM). This pilot study, conducted at an urban clinic, explores the IPV experiences of HIV-positive persons involved in both heterosexual and homosexual relationships. Fifty-six HIV-positive individuals were interviewed to assess for verbal, physical, and sexual IPV, and for HIV-related abuse and attitudes regarding routine IPV screening. Approximately three quarters (73%) of the sample reported lifetime IPV and 20% reported current abuse. Physical IPV (85%) was cited the most by abused participants. IPV rates were highest among African-Americans and MSM. More than one-fourth (29%) of those abused felt the abuse was related to their HIV status. A majority of participants favored IPV screening by providers, but felt it might increase risk of IPV. IPV and its association to HIV are significant issues among this sample. Findings support the need for developing new programs that address these epidemics simultaneously.

Perceptions of neighborhood collective efficacy moderate the impact of maltreatment on aggression.

This study examined the moderating influence of positive neighborhood factors such as social cohesion and informal social control (collective efficacy), on the relationship between child maltreatment and aggressive behavior at age 12. Caregiver (N = 861) and youth (N = 823) dyads were interviewed when youth were aged 12 as part of a longitudinal study of child abuse and neglect (LONGSCAN). Caregivers and youth provided reports of youth externalizing behaviors while caregivers provided perceptions of collective efficacy. Child Protective Services records and youth's self-report of abuse experiences provided information on history of maltreatment. Multivariate analyses examined the moderating effect of collective efficacy on the influence of child abuse and neglect on youth externalizing behaviors. Neighborhood factors did moderate the association between earlier neglect and aggression at age 12, such that youth who experienced neglect, but not abuse, had lower externalizing scores in neighborhoods with higher levels of collective efficacy. Neighborhood-level factors such as collective efficacy should be considered as protective in preventing externalizing behaviors for youth who have experienced maltreatment.