Development of a "survival" guide for substance users in Harlem, New York City.

The community advisory board (CAB) of the Harlem Urban Research Center, which includes community service providers, Department of Health workers, and academics, identified substance users' health as an action priority. The CAB initiated the development of a wellness guide to provide informational support for substance users to improve access to community services. Focus groups of current and former users engaged substance users in the guide development process and determined the guide's content and "look." Focus group participants recommended calling this a "survival" guide. The guide will include three sections: (a) health information and how to navigate the system to obtain services, (b) a reference list of community services, and (c) relevant "hotline" numbers. The design will incorporate local street art. Substance users continue to shape the guide through ongoing art workshops. Dissemination and evaluation of the guide will continue to involve substance users, community service providers, and academics.     

Access to resources for substance users in Harlem, New York City: service provider and client perspectives.

The Urban Research Center (URC) in Harlem, New York City, is a collaboration of community members, service providers, and academics. A Community Advisory Board (CAB) meets regularly to formulate priorities for action and to direct research. A conceptual model of social determinants of health relevant to the Harlem community was developed. Early meetings of the CAB identified substance use as a health concern in the Harlem community. Access to social services was identified as a key social determinant that should guide research and intervention efforts of the URC. Surveys of service providers and of substance users were carried out to quantify availability of information and barriers to access. This article discusses the CAB process that led to the model of social determinants, development of surveys, and interpretation of results. The authors also discuss survey results and how the URC will use these results to develop interventions.     

Community's voice in managing childhood asthma: the assessment phase of research

This study was designed to investigate community beliefs about caring for childhood asthma and to elicit suggestions for interventions to improve asthmatic children's health. Focus groups were conducted with parents of children with asthma, children with asthma, school staff, and health care and childcare professionals. Data were analyzed for themes, such as disruption of normal living and having to work in a chaotic system, enabling researchers to posit a core belief for each group. These core beliefs, together with encompassed other, related beliefs held by group members, guide attitudes and actions about asthma. Interventions recommended by focus group participants included creating an asthma play, asthma education, and developing a clinic-based registry to standardize asthma documentation. The community's voice is important in assessment and design of health improvement projects. Incorporating the community's suggestions gives the community a sense of contributing to the health care of their children with asthma.     

Researcher-decision-maker partnerships in health services research: Practical challenges, guiding principles

ABSTRACT: BACKGROUND: In health services research, there is a growing view that partnerships between researchers and decision-makers (i.e., collaborative research teams) will enhance the effective translation and use of research results into policy and practice. For this reason, there is an increasing expectation by health research funding agencies that health system managers, policy-makers, practitioners and clinicians will be members of funded research teams. While this view has merit to improve the uptake of research findings, the practical challenges of building and sustaining collaborative research teams with members from both inside and outside the research setting requires consideration. A small body of literature has discussed issues that may arise when conducting research in one's own setting; however, there is a lack of clear guidance to deal with practical challenges that may arise in research teams that include team members who have links with the organization/community being studied (i.e., are "insiders"). DISCUSSION: In this article, we discuss a researcher-decision-maker partnership that investigated practice in primary care networks in Alberta. Specifically, we report on processes to guide the role clarification of insider team members where research activities may pose potential risk to participants or the team members (e.g., access to raw data). SUMMARY: These guiding principles could provide a useful discussion point for researchers and decision-makers engaged in health services research.     

Organizing community research partnerships in the struggle against AIDS.

Despite pharmaceutical advances, AIDS remains a health problem difficult to treat, leaving preventive interventions as the primary means of promoting risk avoidance. Increasing the capacity of university-based researchers to develop culturally, developmentally, and contextually appropriate AIDS prevention strategies requires the collaboration of community service and advocacy partners. To date, neither university researchers nor community providers have a great deal of partnership experience. Thus, a common language and set of experiences are yet to be developed. This article reviews the history of university-community and researcher-community collaboration for AIDS research and intervention, placing the innovative work of the University of California, San Francisco (UCSF) Center for AIDS Prevention Studies and its community and foundation partnerships among those efforts at the forefront of the community-university dialogue. It concludes with suggestions derived from the collaborative work of UCSF researchers and community service partners to strengthen efforts to develop theory, research methods, and results that are immediately useful and productive of long-term prevention research efforts.     

Using Community‐Based Participatory Research (CBPR) to Target Health Disparities in Families

Community‐based participatory research (CBPR) is an action research approach that emphasizes collaborative partnerships between community members, community organizations, health care providers, and researchers to generate knowledge and solve local problems. Although relatively new to the field of family social science, family and health researchers have been using CBPR for over a decade. This paper introduces CBPR methods, illustrates the usefulness of CBPR methods in families and health research, describes two CBPR projects related to diabetes, and concludes with lessons learned and strengths and weaknesses of CBPR.     

Caring for Young Children with Asthma: Perspectives from Urban Community Health Centers

Asthma disproportionately affects low-income, minority youth, with notable disparities among children <5 years of age. Understanding the perceptions of urban community health centers (CHCs) regarding treating young children with asthma could improve care for these patients. This study uses data from semi-structured focus groups with staff from eight urban CHCs. Themes emerged in three domains. Within the parent/family domain, providers noted low rates of follow-up visits, low health literacy, and—for young children specifically—misunderstanding about the diagnosis. At the CHC level, providers needed more staff, space, and comfort with applying the guidelines to infants and young children. CHCs reported asthma registries, population health oversight, and an asthma champion improved care. At the system level, providers wanted improved communication with emergency departments and community outreach programs. Reducing these multi-level barriers may improve care.     

Challenges and Facilitating Factors in Sustaining Community-Based Participatory Research Partnerships: Lessons Learned from the Detroit, New York City and Seattle Urban Research Centers

In order to address the social, physical and economic determinants of urban health, researchers, public health practitioners, and community members have turned to more comprehensive and participatory approaches to research and interventions. One such approach, community-based participatory research (CBPR) in public health, has received considerable attention over the past decade, and numerous publications have described theoretical underpinnings, values, principles and practice. Issues related to the long-term sustainability of partnerships and activities have received limited attention. The purpose of this article is to examine the experiences and lessons learned from three Urban Research Centers (URCs) in Detroit, New York City, and Seattle, which were initially established in 1995 with core support from the Centers for Disease Control and Prevention (CDC). The experience of these Centers after core funding ceased in 2003 provides a case study to identify the challenges and facilitating factors for sustaining partnerships. We examine three broad dimensions of CBPR partnerships that we consider important for sustainability: (1) sustaining relationships and commitments among the partners involved; (2) sustaining the knowledge, capacity and values generated from the partnership; and (3) sustaining funding, staff, programs, policy changes and the partnership itself. We discuss the challenges faced by the URCs in sustaining these dimensions and the strategies used to overcome these challenges. Based on these experiences, we offer recommendations for: strategies that partnerships may find useful in sustaining their CBPR efforts; ways in which a Center mechanism can be useful for promoting sustainability; and considerations for funders of CBPR to increase sustainability. Israel, Lichtenstein, and McGranaghan are with the University of Michigan, School of Public Health, Ann Arbor, MI, USA; Krieger and Ciske are with the Epidemiology, Planning and Evaluation Unit, Public Health—Seattle & King Country, Seattle, WA, USA; Vlahov is with the Center for Urban Epidemiologic Studies, New York Academy of Medicine, New York, NY, USA; Foley is with the Department of Community and Preventive Medicine, Mt. Sinai Medical School, New York, NY, USA; Fortin is City Research Scientist, New York City Department of Health, New York, NY, USA; Guzman is with the Community Health and Social Services, Inc., Detroit, MI, USA; Palerno is with the Center for Multicultural and Community Affairs, Mount Sinai School of Medicine, New York, NY, USA; Tang is with the Aging and Adult Services Company, Asian Counseling and Referral Services, Seattle, WA, USA. The first three authors are the Principal Investigators of the three Urban Research Centers. The other coauthors from the three Centers are listed in alphabetical order. See the acknowledgements at the end for a list of all of the partner organizations involved.     

Can the democratic ideal of participatory research be achieved? An inside look at an academic-indigenous community partnership

Democratic or equal participation in decision making is an ideal that community and academic stakeholders engaged in participatory research strive to achieve. This ideal, however, may compete with indigenous peoples' right to self-determination. Study objectives were to assess the perceived influence of multiple community (indigenous) and academic stakeholders engaged in the Kahnawake Schools Diabetes Prevention Project (KSDPP) across six domains of project decision making and to test the hypothesis that KSDPP would be directed by community stakeholders. Self-report surveys were completed by 51 stakeholders comprising the KSDPP Community Advisory Board (CAB), KSDPP staff, academic researchers and supervisory board members. KSDPP staff were perceived to share similar levels of influence with (i) CAB on maintaining partnership ethics and CAB activities and (ii) academic researchers on research and dissemination activities. KSDPP staff were perceived to carry significantly more influence than other stakeholders on decisions related to annual activities, program operations and intervention activities. CAB and staff were the perceived owners of KSDPP. The strong community leadership aligns KSDPP with a model of community-directed research and suggests that equitable participation-distinct from democratic or equal participation-is reflected by indigenous community partners exerting greater influence than academic partners in decision making.     

"The history of health in Dayton": a community-academic partnership

Academic institutions have always found it a challenge to persuade community members to participate in academic research projects. Starting an open dialogue is usually the critical first step. To begin this dialogue with community members in Dayton, Ohio, in 1999, staff from Wright State University decided to organize a community forum, "The History of Health in Dayton." The forum was intended as the first project of a new research organization, the Alliance for Research in Community Health (ARCH), established with federal funding from the Health Resources and Services Administration in 1998. ARCH was created as a bridge between the Department of Family Medicine of Wright State University School of Medicine and the Center for Healthy Communities, a health advocacy and service organization committed to health professions education. ARCH's mission is to improve the health of citizens of Dayton through research involving community participation. Through ARCH, community members help researchers define priorities, resolve ethical issues, refine procedures, and interpret results. Guidelines for participatory research, proposed by the National Primary Care Research Group in 1998 and adopted by the alliance, emphasize the importance of open dialogue among researchers, subjects, academics, and community members. The initial response to the forum was enthusiastic, with a majority of community residents expressing interest in attending future presentations.     

Community Organizing Network for Environmental Health: Using a Community Health Development Approach to Increase Community Capacity around Reduction of Environmental Triggers

The Community Organizing Network for Environmental Health (CONEH), a project of Community Action Against Asthma, used a community health development approach to improve children’s asthma-related health through increasing the community’s capacity to reduce physical and social environmental triggers for asthma. Three community organizers were hired to work with community groups and residents in neighborhoods in Detroit on the priority areas of air quality, housing, and citizen involvement in the environmental project and policy decision-making. As part of the evaluation of the CONEH project, 20 one-on-one semi-structured, in-depth interviews were conducted between August and November 2005 involving steering committee members, staff members, and key community organization staff and/or community members. Using data from the evaluation of the CONEH project, this article identifies the dimensions of community capacity that were enhanced as part of a CBPR community health development approach to reducing physical and social environmental triggers associated with childhood asthma and the factors that facilitated or inhibited the enhancement of community capacity.     

A Small Grants Program to Involve Communities in Research

A key tenet of community-based participatory research is that communities be involved in all facets of research, from defining the problem to identifying solutions, to assisting in the research, and to participating in the publication of results. In this study, we instituted a small grants program for community participation. A Request for Applications (RFA) was developed and circulated widely throughout the Valley. The RFA sought proposals to address health disparities in cancer education, prevention, and treatment among Hispanics living in the Valley. Funds available were $2,500.00–3,500.00 for 1 year’s worth of work. To help evaluate the progress of the RFA community projects according to the perspectives of the Community Advisory Board (CAB), an open-ended, semi-structured interview was created and administered by a former staff member to CAB members. In 4 years, ten small grants proposed by community members were funded. Funds allocated totaled approximately $2,500.00–3,500.00 for 1 year’s worth of work. To help evaluate the progress of the RFA community projects according to the perspectives of the Community Advisory Board (CAB), an open-ended, semi-structured interview was created and administered by a former staff member to CAB members. In 4 years, ten small grants proposed by community members were funded. Funds allocated totaled approximately 25,000. Interviews with CAB members indicated that the RFA program was perceived positively, but there were concerns about sustainability. Our community grants program resulted in the implementation of several novel cancer prevention programs conducted by a variety of community organizations in the Lower Yakima Valley.     

A 10-Point Strategic Checklist for Rural Health Care Systems

A checklist format is used to provide a framework for rural hospital executives and community members for gauging the health and stability of rural hospitals and rural hospital systems. Benchmarks are provided for financial and operational performance and emphasis is placed on medical staff size and physician recruitment. Physician/hospital organizations and regional partnerships are used as examples of strategies available to rural providers. The importance of market knowledge and regional strategic alliances also is stressed. In an era of dwindling resources and tight reimbursement, rural providers are encouraged to consider cooperative clinical programming and technology consolidation.     

吸毒严重地区开展艾滋病防治项目社区支持情况的定性研究

目的了解目前中国静脉吸毒艾滋病高流行社区中社区成员对在当地吸毒人群中开展艾滋病防治项目的态度与支持情况。方法在四川省选择开展艾滋病防治工作的社区,研究人员使用制定好的定性访谈提纲对不同类型的访谈对象进行个人深入访谈。访谈对象为吸毒者、吸毒者家属、社区居民与居委会工作者和相关行政部门工作者。结果本次定性研究共访谈27人,不同层次的社区成员对艾滋病问题持比较宽容的态度,并愿意开展长期的HIV/AIDS防治工作,虽然对吸毒者存在一些矛盾的心理,但绝大多数人都支持在社区内开展艾滋病防治项目,一方面希望帮助更多吸毒者戒毒,另一方面希望预防与控制艾滋病等疾病的传播。结论社区内已经形成了较好的开展艾滋病防治项目的支持环境,建议通过建立社区顾问委员会(CAB),采取多种形式加强社区各界成员的合作并使之成为研究者和研究对象之间重要的桥梁。     

Establishment of a Community Advisory Board (CAB) for tuberculosis control and research in the Inanda,Ntuzuma and KwaMashu (INK) area of KwaZulu-Natal,South Africa

ObjectivesTo strengthen community mobilization, education, awareness and involvement in research to improve Tuberculosis (TB) control, by building partnership between communities and the health sector through the establishment of a Community Advisory Board (CAB) in the Inanda, Ntuzuma and KwaMashu (INK) area.MethodsKey stakeholders from multiple sectors of the target community were identified. Two workshops were held with the aim of communicating the need for CAB and selecting its members. A 22 member INK CAB with representatives from different sectors in the community was selected. CAB members were trained through a 2-day workshop on TB and research.ResultsVarious activities were successfully initiated and spearheaded by the INK CAB, and these involved training of Traditional Healers, recruiting of more TB tracer teams, organizing awareness campaigns during TB World Day, establishing TB school peer educators and links with NGOs to support impoverished TB patients all with positive outcomes.ConclusionsThe INK CAB is a successful example of providing a mechanism for community consultation and participation that contributes to promoting and facilitating relevant research and TB control activities.     

Perceptions of evidence-based programs among community-based organizations tackling health disparities: a qualitative study

Dissemination of prevention-focused evidence-based programs (EBPs) from research to community settings may improve population health and reduce health disparities, but such flow has been limited. Academic-community partnerships using community-based participatory research (CBPR) principles may support increased dissemination of EBPs to community-based organizations (CBOs). This qualitative study examined the EBP-related perceptions and needs of CBOs targeting underserved populations. As part of PLANET MassCONECT, a CBPR study, we conducted six key informant interviews with community leaders and four focus groups with CBO staff members in Boston, Worcester and Lawrence, Massachusetts, in 2008. Working definitions of EBPs among CBO staff members varied greatly from typical definitions used by researchers or funders. Key barriers to using EBPs included: resource constraints, program adaptation challenges and conflicts with organizational culture. Important facilitators of EBP usage included: program supports for implementation and adaptation, collaborative technical assistance and perceived benefits of using established programs. This exploratory study highlights differences among key stakeholders regarding the role of evidence in program planning and delivery. An updated perspective should better incorporate CBO perspectives on evidence and place greater, and much needed, emphasis on the impact of context for EBP dissemination in community settings.     

Acceptability of participatory social network analysis for problem-solving in Australian Aboriginal health service partnerships

ABSTRACT: BACKGROUND: While participatory social network analysis can help health service partnerships to solve problems, little is known about its acceptability in cross-cultural settings. We conducted two case studies of chronic illness service partnerships in 2007 and 2008 to determine whether participatory research incorporating social network analysis is acceptable for problem-solving in Australian Aboriginal health service delivery. METHODS: Local research groups comprising 13-19 partnership staff, policy officers and community members were established at each of two sites to guide the research and to reflect and act on the findings. Network and work practice surveys were conducted with 42 staff, and the results were fed back to the research groups. At the end of the project, 19 informants at the two sites were interviewed, and the researchers conducted critical reflection. The effectiveness and acceptability of the participatory social network method were determined quantitatively and qualitatively. RESULTS: Participants in both local research groups considered that the network survey had accurately described the links between workers related to the exchange of clinical and cultural information, team care relationships, involvement in service management and planning and involvement in policy development. This revealed the function of the teams and the roles of workers in each partnership. Aboriginal workers had a high number of direct links in the exchange of cultural information, illustrating their role as the cultural resource, whereas they had fewer direct links with other network members on clinical information exchange and team care. The problem of their current and future roles was discussed inside and outside the local research groups. According to the interview informants the participatory network analysis had opened the way for problem-solving by "putting issues on the table". While there were confronting and ethically challenging aspects, these informants considered that with flexibility of data collection to account for the preferences of Aboriginal members, then the method was appropriate in cross-cultural contexts for the difficult discussions that are needed to improve partnerships. CONCLUSION: Critical reflection showed that the preconditions for difficult discussions are, first, that partners have the capacity to engage in such discussions, second, that partners assess whether the effort required for these discussions is balanced by the benefits they gain from the partnership, and, third, that "boundary spanning" staff can facilitate commitment to partnership goals.     

Community action and reflective practice in health promotion research

While health promotion practitioners are engaging increasingly in research, there has been little examination of the practical dilemmas they may face in negotiating and collaborating with academics and community members in action research projects. This paper analyses how the practice of health promotion can interact with action research, and considers issues that arise for organizationally based health promotion practitioners and professional researchers. The first section charts types of action research along three dimensions (power, goals/values, resources). The second section examines some of the issues and practical dilemmas which arise in negotiating and researching collaborative projects in community health promotion. The discussion includes the differing perspectives of: practitioners (managerial and frontline), community members and academic researchers. The final section outlines a hybrid model of action research, developed in our work with community members, organizationally based health promoters and academy-based researchers. It combines the reflective practice of practice-based action research with the community participation and control of participatory research. The model is called community reflective action research.     

Stärkung von Gemeinschaften: Partizipative Forschung zu HIV-Prävention mit Migrant/innen

Background

Communities play a key role in health promotion, in the concept of structural prevention and also in participatory health research. Community-Based Participatory Research (CBPR) aims to equitably involve community partners in investigating problems, identifying resources and developing solutions in order to improve community health. The participating communities are supposed to benefit from the research collaboration. However, whether this aim is actually realized in practice is only rarely analyzed.

Aim

This article explores how the community partners benefited from participating in a CBPR study on HIV prevention with migrant communities in Germany (PaKoMi).

Methods

The PaKoMi-Project was a 3-year participatory research project which aimed to improve the involvement of migrant communities in HIV research and prevention services. It was conducted by the national association of community-based AIDS service organisations (Deutsche AIDS-Hilfe e. V.) in collaboration with partners from different immigrant communities, AIDS service providers and researchers from the Social Science Research Center Berlin (WZB). Community members were trained as peer researchers and supported to conduct local CBPR-projects (case studies) in four cities. In the final evaluation, the partners stated what they gained from collaborating in the project. The current analysis focuses on the benefits for the participating partners, their communities and the field of HIV prevention.

Results

Competences were developed by the participating individuals and community capacities were strengthened, for example by developing networks, peer-based initiatives and migrant self organisations. Concepts, tools and recommendations for improving HIV prevention services for migrants were developed.

Conclusions

The PaKoMi-project shows how communities can benefit from participatory research.     

Indigenous Peoples of North America: Environmental Exposures and Reproductive Justice

Background: Indigenous American communities face disproportionate health burdens and environmental health risks compared with the average North American population. These health impacts are issues of both environmental and reproductive justice.Objectives: In this commentary, we review five indigenous communities in various stages of environmental health research and discuss the intersection of environmental health and reproductive justice issues in these communities as well as the limitations of legal recourse.Discussion: The health disparities impacting life expectancy and reproductive capabilities in indigenous communities are due to a combination of social, economic, and environmental factors. The system of federal environmental and Indian law is insufficient to protect indigenous communities from environmental contamination. Many communities are interested in developing appropriate research partnerships in order to discern the full impact of environmental contamination and prevent further damage.Conclusions: Continued research involving collaborative partnerships among scientific researchers, community members, and health care providers is needed to determine the impacts of this contamination and to develop approaches for remediation and policy interventions.