Community-driven Research Research Articles

Tangles of Neurogenetics, Neuroethics, and Culture

Neurogenetics promises rich insights into how the mind works. Researchers investigating the range of topics from normal brain functioning to pathological states are increasingly looking to genetics for clues on human variability and disease etiology. Is it fair to assume this interest in neurogenetics is universal? How should researchers and clinicians approach ideas of consent to research or prediction of disease when a subject or patient understands the mind with concepts or language incompatible with neurogenetics? In this paper we consider how non-Western philosophies bring complexity to ideas of individual and community consent and confidentiality in the context of neurogenetics.

Native American breast cancer survivors' physical conditions and quality of life.

Based on Survivors' Guidance, an interactive, Web-based, culturally relevant Native American cancer survivorship program, Native American Cancer Education for Survivors (NACES), was developed. The focus of the program is to improve quality of life (QOL) for Native American breast cancer survivors. NACES is a community-driven research and education project, based on the Social Cognitive Theoretical Model. Participants complete a QOL survey that includes physical, psychosocial, spiritual, and social components. This publication focuses on the physical component of the survey collected by trained Native American patient advocates, and compares physical conditions among Native American breast cancer survivors who were diagnosed within 1 year, those diagnosed between 1 and 4 years, and those who are long-term survivors (diagnosed > or = 5 years ago). For the first time, survivorship issues are reported specifically for Native American breast cancer patients (n = 266). Selected access issues document situations that contribute to disparities. Comorbidities such as high blood pressure and arthritis are common in the survivors, with more than a third having diabetes, in addition to breast cancer. Numerous side effects from cancer treatments are experienced by these survivors. These data describe what Native American breast cancer patients are experiencing based on self-reported information. Clearly there is need for much more work and long-term tracking of Native American patients to begin to document if or how the severity of physical symptoms lessens over time and if their experiences are significantly different from non-Native Americans.

Integrating Epidemiology, Education, and Organizing for Environmental Justice: Community Health Effects of Industrial Hog Operations

The environmental justice movement has stimulated community-driven research about the living and working conditions of people of color and low-income communities. We describe an epidemiological study designed to link research with community education and organizing for social justice. In eastern North Carolina, high-density industrial swine production occurs in communities of low-income people and people of color. We investigated relationships between the resulting pollution and the health and quality of life of the hog operations' neighbors. A repeat-measures longitudinal design, community involvement in data collection, and integration of qualitative and quantitative research methods helped promote data quality while providing opportunities for community education and organizing. Research could affect policy through its findings and its mobilization of communities.

Familias in the Heartland: Exploration of the Social, Economic, and Cultural Realities of Latino Immigrants

This survey of 957 Latino immigrant adults in urban and suburban communities in the greater Kansas City metropolitan area explores the migration experiences, employment contexts, family structures, and integration processes of an emerging and rapidly growing immigrant population. The study is an example of community-driven research, conducted by a nonprofit community development and immigrant rights organization in close partnership with local immigrant leaders.

The West End Revitalization Association's Community-Owned and -Managed Research Model: Development, Implementation, and Action

Principal investigators (PIs) of community-based projects are predominantly university faculty who partner with community-based organizations (CBOs) to find a place to conduct research in communities that will cooperate with their research objectives. University-managed research models (UMRMs) are not always beneficial for CBOs because the university usually manages the study, collects and owns the data, and leverages control at each stage of research, without priority to resolution of problems impacting the quality of life of participating communities. We present the principles of community-owned and -managed research (COMR), as a new community-driven research model developed by the West End Revitalization Association (WERA), a CBO in Mebane, North Carolina. We describe WERA's development of COMR, compare the power hierarchies of COMR with traditional UMRMs, distinguish COMR partnerships from UMRM partnerships, discuss disbursement of funds, and control/ownership of data. As the PI of research activities, WERA drafted Memoranda of Agreement (MOAs) for all partners, including academic researchers, implemented quality assurance and control procedures, submitted community research protocols for institutional review, and retained data ownership for action, activism, and problem solving. COMR methods encouraged corrective action of environmental justice (EJ) problems in affected communities, including provision of public, regulated drinking water and sewer services. COMR promotes CBOs with demonstrated organizational capacity to PI and project manager. The COMR model goes beyond UMRMs and CBPR because it emphasized the credibility and capacity of CBOs to develop, own, manage, foster, and sustain viable research agendas to address ongoing environmental hazards and related threats to health and quality of life.

The Latino Mental Health Project: A Local Mental Health Needs Assessment

In this article, we present the results of a local needs assessment of the mental health experiences, service needs, and barriers to treatment-seeking of the Latino population in Worcester, Massachusetts. Overall, participants reported relatively high rates of experiences with symptoms of mental health problems, they indicated using a range of both formal and alternative mental health services, and they noted a variety of instrumental, attitudinal, and culturally-specific barriers to seeking mental health services. Findings are discussed with regards to the role that community-driven research can play in advancing efforts to provide relevant services to underserved populations.

Community-Based Environmental Protection in Low-Income African-American Communities in North Carolina

TM5-O-04 Introduction: The purpose of this paper is to highlight the efforts of a local organization in Mebane, NC that has used community-based research and environmental surveillance to address negative public health risks, environmental injustice, and health disparities in low-income black neighborhoods. These neighborhoods are burdened by disproportionate impacts of the built environment including the systematic denial of basic amenities (sewer and water services); overburdened by locally unwanted land uses; abused by inequities in land-use planning and zoning; and problems with non-compliance with civil rights and environmental justice regulations by local, state, and federal officials. Introduction: The community-driven research approach was used to document and mitigate the differential burden of environmental health hazards on these communities. Community advocates partnered with university researchers to develop acommunity-driven environmental surveillance program. Community members used their knowledge of local land uses to map environmental health risks. Community members helped develop a household hazards survey. Community monitors were trained to collect household hazards survey data and water samples that were analyzed to assess the levels of fecal pollution from septic systems in residential water supplies. Community-driven public health education and leadership workshops were held to increase environmental knowledge and leadership abilities of affected residents. Results: Community hazards mapping showed that the neighborhoods had an inequitable impact of the built environment including planned highway, a landfill, sewage treatment plant, and brownfields. Survey data showed that many households were dilapidated, had a high prevalence of septic system failure, and had structural problems that led to mold and mildew issues. High concentrations of bacterial indicators of fecal pollution were detected at residential control and study sites exceeding Environmental Agency single sample maximum allowable densities. The community environmental protection, research and activism efforts led to a moratorium on the building of the transportation bypass, upgrades in sewer, water, and transportation infrastructure in some neighborhoods, and more stakeholder involvement in community planning and revitalization. Conclusion: The community-based research partnerships have led to an increased capacity of the community organization to document and redress local environmental health issues. The study provides evidence of inequity of sewer services and drinking and surface water vulnerability to sources of fecal contamination impacting residents in these communities. This work also confirms that community-based environmental protection is a model approach that other communities burdened by environmental health disparities should use to empower themselves to affect environmental and social change at the local level.

Health on the Banks of the Rio Grande

At the New Mexico Center for Environmental Health Sciences (NMCEHS), community concerns and relationships are as much at the center’s foundation as the latest research techniques. According to center director Scott Burchiel, the unique populations of New Mexico—including a high number of Hispanics and Native American tribes, pueblos, and sovereign nations—steer the center’s course. “One of the things we have tried to do is to determine what these populations’ concerns are for environmental health, because we want our center to be focused on environmental public health, and we want to work on basic research projects that address issues that people in this region are particularly interested in,” he says. Based in Albuquerque as a partnership of The University of New Mexico Health Sciences Center and the Lovelace Respiratory Research Institute (LRRI), the NIEHS-funded center comprises major research cores in environmental cancer and oxidative stress, cardiovascular toxicology, environmental lung disease, and population health and epidemiology. The center also includes world-class facility cores (particularly for inhalation toxicology), a pilot project program to provide funding for small innovative research studies, and an unusually strong community outreach and education program (COEP). Community input is essential, as is trust. “We have investigators who may have certain interests for certain kinds of projects and want to work with communities,” says Burchiel. “But when we go to the community, we find out that [the community has] a different agenda, different interests. We’ve been learning how to work with communities since we’ve had this environmental health center.” It’s a process that involves a lot of development of community relationships and trust relationships. Burchiel says that investigating environmental health problems such as asthma requires a broad definition of environment. He says, “In our center, we define the environment quite broadly. It includes nutritional, social, behavioral, economic, and built environment components. . . . We have not only environmental epidemiologists [but] also social epidemiologists who help us look at social factors in assessing economic and poverty factors.”

Community and University Participation in Disaster-Relief Recovery

Marginalized groups that are traditionally excluded from policy and decision-making are often also disproportionately affected by the hardships of natural disasters. By including community residents in research and planning, public health practitioners and researchers can create programs that have immediate relevance and policy implications. This article describes a case study of the formation of a community-uniStephanie Farquhar is Assistant Professor, Portland State University, School of Community Health, 450F Urban Center, 506 Mill Street, Portland, OR 97207-0751. At the time of the study, Dr. Farquhar was a W.K. Kellogg Postdoctoral Fellow, University of North Carolina at Chapel Hill. Noelle Dobson is Program Manager, Active Living by Design, American Heart Association, Pacific Mountain Affiliate, Portland, OR. Address correspondence to: Stephanie Farquhar, PhD (E-mail: farquhar@pdx.edu). Portions of this article were adapted with permission from a book chapter written by Farquhar, S.A., and Wing, S. (2002). Methodological and ethical considerations of community-driven environmental justice research: Examination of two case studies from rural North Carolina. In M. Minkler & N. Wallerstein (Eds.), Community-based participatory research for health (pp. 221-241). New York: Jossey Bass. This material is used by permission of John Wiley & Sons, Inc. versity partnership and a community-based participatory research project conducted in the aftermath of Hurricane Floyd. The description of methods used and the implications for practice will highlight the importance of including those most affected by a natural disaster. Members of several groups worked collaboratively to define the social and public health concerns of a rural North Carolina community and to create changes in disaster-recovery policy and practice.

Community-based participatory research: implications for public health funding.

Community-based participatory research (CBPR) increasingly is being recognized by health scholars and funders as a potent approach to collaboratively studying and acting to address health disparities. Emphasizing action as a critical part of the research process, CBPR is particularly consistent with the goals of "results oriented philanthropy" and of government funders who have become discouraged by the often modest to disappointing results of more traditional research and intervention efforts in many low income communities of color. Supporters of CBPR face challenging issues in the areas of partnership capacity and readiness, time requirements, funding flexibility, and evaluation. The authors suggest strategies for addressing such issues and make a case for increasing support of CBPR as an important tool for action-oriented and community-driven public health research.

Community-driven Research in Cultural Heritage Management: the Waanyi Women's History Project

Community involvement in heritage management is an issue that is increasingly being debated within heritage studies and management agencies. This paper examines a case study from Queensland, Australia, of a community-initiated and controlled heritage project. The paper outlines and discusses the implications that this project has to an understanding of the nature of heritage, the processes of its management and the role of expertise within management. It argues that the development of a management process that is meaningfully inclusive at a community level must overthrow the ways in which heritage is defined and understood. Not only must concepts of intangible heritage be developed, but also concepts of heritage must usefully incorporate an understanding of the nature of intangible experiences and values that are associated with the physical aspects of heritage. Moreover, it is important to understand that these experiences and values are themselves open to management and regulation. Subsequently, an inclusive management process requires a self-conscious evaluation of the role of heritage managers in the process and a conscious decision to support, or otherwise, local community aspirations.

Neighborhood experiences, community connection, and positive beliefs about adolescents among urban adults and youth

AbstractAdults have become increasingly isolated from adolescents in their communities, and this condition contributes to negative stereotypes about teens. Integrating research‐ and practice‐based knowledge, a theoretical model was constructed to predict positive beliefs about adolescents, specifically the extent to which adults and adolescents believe that teens are motivated and competent to act on behalf of their neighborhoods. The model includes two pathways to positive beliefs about adolescents. It was hypothesized that the experience of volunteering, and residing in a neighborhood that is perceived as safe and having adequate resources, would be associated with positive beliefs about adolescents. It was further predicted that community connectedness, as assessed by individuals' sense of community and perceived norm of adult caring, would mediate these associations. The hypotheses were tested through analysis of phone interviews with adults and adolescents from a large northeastern city. The model received consistent, albeit not complete, support between both samples. Results indicate that an understanding of beliefs about teens lies, in significant part, in the neighborhood experiences of adults and adolescents and in their sense of connectedness with the places in which they live. Implications for further research in this emerging area of inquiry are identified. While community‐driven research poses methodological challenges, this inquiry also illustrates the theoretical and practical utility of grounding study hypotheses, in part, on the causal relationships that have been observed by practitioners in neighborhood settings. © 2002 Wiley Periodicals, Inc.

Eliminating health disparities among minority women: a report on conference workshop process and outcomes.

A national conference convened in May 2001 explored health disparities among minority women. It included 5 one-hour workshops that randomly assigned each participant to 1 of 4 groups. Groups generated recommendations on conference topics and from these identified priority recommendations. Trained facilitators guided groups through brainstorming and weighted voting processes; individual recommendations were submitted in writing. Participants generated 598 recommendations, 71 of them voted as priorities; these were analyzed to capture participants' "messages." Central themes focused on access issues and cultural incompetence as deterrents to the elimination of health disparities and on education, funding, and community-based, community-driven research as mechanisms for change. Strategies for change included reinventing or expanding the role of minority communities and changing health care itself and "how" it does its work. The essential element in all recommendations was community leadership and control.

Social responsibility and research ethics in community-driven studies of industrialized hog production.

Environmental health research can document exposures and health effects that result from inequitable relationships between communities of low income or people of color and the institutions that derive benefits (profits, federal and state funding or services, avoidance of wastes) from activities and policies that burden these communities. Researchers, most of whom work in relatively privileged institutions, are placed in situations of conflicting loyalties if they conduct research in collaboration with, or on behalf of, communities burdened by environmental injustices. These conflicts can threaten the self-interest of researchers and may raise social and ethical issues that do not typically arise in research projects that respond to the agendas of institutions. This article describes how we addressed issues of research ethics and social responsibility in environmental health research on industrialized hog production in North Carolina. Researchers and institutional review boards are not well prepared to address ethical issues when interests of entire communities, as well as individual research participants, are involved. Community-driven research partnerships can help address problems in research ethics and can enhance the social responsibility of researchers and their institutions.

Doing community-driven research: a description of Seattle Partners for Healthy Communities.

Seattle Partners, an Urban Research Center (URC) funded by the Centers for Disease Control and Prevention (CDC), is a partnership of community agency representatives, community activists, public health professionals, academics, and health care providers whose mission is to improve the health of urban Seattle, Washington, communities by conducting community-based participatory research. This article describes the development and characteristics of Seattle Partners. Using primarily qualitative methods, including periodic in-depth interviews, evaluators identified the components necessary for Seattle Partners to maintain a collaborative and establish a research center driven by community interests. Seattle Partners is run by an unrestricted and inclusive board that has spent 5 years developing both an operating structure and various research interventions. Operating under Community Collaboration Principles, the board identified social determinants of health as the priority area in which to work. Collaboration, "small and concrete" accomplishments, skilled individuals, and funder support directly influence the success of the center. Decision making, project selection, and board composition have all been challenges to work through. Learning how to do and sustain the work are lessons being learned as Seattle Partners matures.

Building Communities with People Who Have Disabilities

SUMMARY Many community psychologists have the educational and professional backgrounds which make them potentially valuable resources for the disabilities field. The Americans with Disabilities Act of 1990 (ADA) and the reauthorized Individuals with Disabilities Education Act (IDEA) call for greater community inclusion, empowerment, and self-determination for persons with disabilities. Community psychologists with interests in these concepts, as well as in interdisciplinary training, collaboration, community-driven research, and political action are needed as leaders in the disabilities field. This paper explores the development of one community psychologist's career working with persons who have disabilities and the institutions that support them.

Diesel exhaust exposure among adolescents in Harlem: a community-driven study.

This study sought individual-level data on diesel exhaust exposure and lung function among adolescents in Harlem as part of a community-driven research agenda. High school students administered in-person surveys to seventh grade students to ascertain information on demographics, asthma history, and self-reported and maternal smoking. Urine samples were assayed for 1-hydroxypyrene (1-HP), a marker of diesel exhaust exposure, and cotinine, a marker of tobacco smoke exposure. Computer-assisted spirometry was used to measure lung function. Three quarters (76%) of the participating students had detectable levels of 1-HP. Three students (13%) had an FEF25-75 of less than or equal to 80% of their predicted measurements, and 4 students (17%) had results between 80% and 90% of the predicted value, all of which are suggestive of possible lung impairment. These data suggest that most adolescents in Harlem are exposed to detectable levels of diesel exhaust, a known exacerbator and possible cause of chronic lung disorders such as asthma. Community-driven research initiatives are important for empowering communities to make needed changes to improve their environments and health.