Keywords

community-based participatory research, prevention

 

Authors

  1. Fletcher, Barbara J. MSN, RN, FAHA, FPCNA, FAAN
  2. Himmelfarb, Cheryl Dennison PhD, RN
  3. Lira, Maria Teresa RN, FPCNA
  4. Meininger, Janet C. PhD, RN, FAAN
  5. Pradhan, Sala Ray MSN, RN, ARNP-C
  6. Sikkema, Joanna MSN, ANP-BC, FAHA, FPCNA

Abstract

Policy changes are necessary to promote cardiovascular disease prevention. These will involve community-based and public health initiatives for primary and secondary prevention of cardiovascular disease. In this article, we discuss such interventions, community-based participatory research that has been conducted in this area, and implications for capacity building in genetics research. Finally, areas for future research in this area will be identified.

 

Article Content

Policy Changes Needed to Promote Cardiovascular Disease Prevention at the Community Level

The goal of this article is to take a close look at community initiatives that reduce cardiovascular (CV) mortality, including the use of community-based participatory research (CBPR). Interplay exists between genetics and environmental factors in the development of CV disease (CVD). There is an opportunity to further our understanding of this interplay via CBPR as many socioeconomic and environmental factors can be directly linked to one's community.

 

Several highly respected organizations in health care such as the American Heart Association (AHA) and the International Heart Health Network have long realized the integral role of the community environment in implementing primordial (health promotion),1 primary, and secondary prevention for CVD. Both organizations have published statements regarding initiatives for addressing CV health and thereby decreasing CV mortality globally.

 

The AHA guide for improving CV health at the community level provides a comprehensive approach to reducing the burden of CVD and promoting CV health through improving local policies and environments.1 The emphasis focuses on improvements in facilities and resources in the places where people work and live in effort to achieve the following goals: cessation of tobacco use; avoidance of environmental tobacco smoke; reduction in dietary saturated fat, cholesterol, sodium, and calories; increased plant-based food intake; increased physical activity; and access to preventive health care services.1

 

The International Heart Health Network provides a policy framework for population approaches. It calls on governmental agencies, the private sector, voluntary health organizations, employers, and health care providers to "join forces in eliminating this modern epidemic by adopting new policies, making regulatory changes, and implementing health promotion and disease prevention programs directed at entire populations."1

 

The vast majority of CVD and stroke can be attributed to a few deleterious behaviors and lifestyles many times encouraged or perpetrated by the communities in which people live. Modifying harmful behavior and encouraging a healthful lifestyle within the community have the potential to significantly alter global CV mortality. Given the current high prevalence of CVD risk factors and of CVD itself, a 3-pronged approach, including primordial,1 primary, and secondary prevention, must be incorporated in community-based CVD prevention models (Figure). The Figure represents a 3-pronged approach for community-based CVD prevention. The model includes implementation of community programs and CBPR to target prevention at the primordial, primary, and secondary levels. Prevention is achieved through improved management of major CV risk factors.

  
FIGURE. Community-ba... - Click to enlarge in new windowFIGURE. Community-based cardiovascular disease (CVD) prevention. This figure represents a 3-pronged approach for community-based CVD prevention. The model includes implementation of community programs and community-based participatory research to target prevention at the primordial, primary, and secondary levels. Prevention is achieved through improved management of major CV risk factors.

Many community-based efforts suffer from inadequate resources to implement needed interventions. However, proper implementation of merely a single intervention can be beneficial and create an impact on CV health in a community. For example, a workplace-wellness study randomized subjects to either an active intervention versus usual care.2 The active intervention implemented a multifaceted approach providing health education, nutritional counseling, smoking cessation counseling, physical activity promotion, and physician referral.2 Significant benefits were demonstrated through quality-of-life scores and reduction in body fat, cholesterol, blood pressure, and total health risk, with a 48% reduction in medical claim costs.2 With strong support and collaborative efforts from the community and policy makers, program planners can set priorities and implement and evaluate effective programs (Table 1). Table 1 provides examples of programs developed and implemented via collaborative efforts of policy makers and health care professionals. Another representation of successful policy-level intervention is the recent introduction of community-level policy regarding public and workplace smoking restrictions. These restrictions have resulted in a significant decrease in the rate of hospital admissions for acute myocardial infarction.3

  
Table 1 - Click to enlarge in new windowTABLE 1 Examples of Effective Community-Based Programs

Community-level research initiatives, CBPR, and roles for CBPR in CV genetic and environmental exploration are integral to reducing this modern-day epidemic of CVD in local populations and subsequently impact the larger global community.

 

Research Initiatives for Cardiovascular Disease Prevention at the Community-Based Levels

A research base exists providing evidence that community-level interventions can change community-wide behaviors.1,4-8 For more than 3 decades, community prevention trials in the United States and abroad have supported the notion that behaviors can be changed through concerted efforts to organize communities, educate them through mass messaging and direct education, provide screenings for risk factors, and change environments through local programs and policies. Screening tools must be sensitive to specific populations. For example, one of the first CV risk prediction tools was the Framingham equation, which has provided a basis for the majority of risk stratification instruments developed worldwide; the equation is being modified in efforts to address the limitations of the original tool.2-6 One such modification is currently being developed in Santiago, Chile. Here, the Framingham equation was modified based on numerical values that were derived via observational data from this country.

 

Additional research has identified schools, worksites, religious organizations, and health care facilities as sites to facilitate community-wide behavior change.1 Community-based prevention initiatives include a range of risk-reducing, disease prevention strategies to support healthy behaviors and must be easily accessible within a neighborhood. Several large-scale community-based initiatives have proven to be successful and can serve as models for implementing targeted CVD risk reduction. Three successful programs are discussed here.

 

New York City Community-Based Prevention Model

For the past 6 years, the New York City Community-Based Prevention Model has implemented public policy and community-based preventive services that target tobacco use and healthy food availability in key impoverished neighborhoods of New York City (east and central Harlem, south Bronx, and north Brooklyn). These include providing a healthy food environment with fresh fruit and vegetables through vendors, food stands, and government-supported food stamps, health bucks (for the purchase of healthy foods), and farmers markets located in neighborhoods. This program also focuses on providing safe, structured fitness programs for children and adults and neighborhood-based medical providers and clinics.9

 

Centers for Disease Control and Prevention's Health Communities Program

The Centers for Disease Control and Prevention (CDC) have embarked on a very successful initiative, "CDC's Health Communities Program." This national program provides resources and funding for chronic disease prevention initiatives at the community level; these have led to a variety of successful local-level initiatives that have improved community CV health. A few examples are listed in Table 1. These large interdisciplinary programs have targeted the work and home environments of vulnerable populations, successfully supporting behavior change for chronic disease prevention.

 

Worksite risk reduction, faith-based risk reduction, and nurse-managed risk reduction programs are examples of common delivery modalities for providing CVD preventive tools. They have been documented to be quite successful.

 

Several studies reported the benefit of providing CVD risk reduction at worksite locations. The convenience of worksite location promotes employee participation, especially when incentives for reaching goals are provided. These may be in the form of monetary rewards, days off from work, or employer recognition.10,11

 

There is a strong evidence base supporting the partnership of faith-based organizations and community-based health promotion initiatives. These organizations have been engaged to provide both screening and health education in the areas of high blood pressure, diabetes, obesity, tobacco use, and cholesterol management. Faith-based organizations have been found to be especially effective in providing these services to uninsured and vulnerable populations. A review of the literature performed by DeHaven et al12 found that, of 340 programs, the majority (43.4%) were "faith placed," developed by health professionals outside the congregation, versus 24.5% that were "faith based," developed by an internal health ministry. These programs reported significant improvement in overall health status, increased fruit and vegetable consumption, and decreases in weight and blood pressure. Evidence suggests that most of these programs were targeted to African Americans.12-14

 

The effectiveness of nurse-managed programs for CV risk reduction, including individual, group, and community interventions, has been well documented in the literature.15-17 It was also reported that use of nurses who are indigenous to the community and ethnically, linguistically, and experientially sensitive to community needs enhanced program effectiveness and outcomes.18,19 Thus, providing community-based nurse-managed CVD risk reduction programming has been found to significantly impact the health of communities.

 

Vulnerable populations are at particularly high risk for CVD and must not be overlooked in the development of community-based educational tools, screening, and disease management. Traditionally, the most vulnerable populations have the highest incidence of CVD and the least access to risk reduction and disease prevention initiatives. These CV health disparities result from a complex interplay of factors, including ethnicity, socioeconomic status, access to health care, and sex and provider bias.20-22 Disparities commonly manifest themselves as limited availability of easily accessible and affordable healthy foods, absence of safe exercise environments, and limited access to preventive health care. The opportunity to engage in risk-factor modification and healthy lifestyle changes is limited and therefore increases the CVD burden in these populations. Incorporating cultural, ethnic, and socioeconomic parameters into community-based programs promotes lifestyle change and improves the health status of the local and global population. One program addressing CV risk from a culturally and ethnically sensitive stance is the Well-integrated Screening and Evaluation for Women Across the Nation.

 

Well-integrated Screening and Evaluation for Women Across the Nation

The Well-integrated Screening and Evaluation for Women Across the Nation program had 10 unique community-based projects incorporating approximately 8164 women across the United States.23 This program evolved from a CDC initiative for the early detection of cervical cancer and breast cancer (National Breast and Cervical Cancer Early Detection Program) and has expanded to include CVD screening and intervention. These projects developed culturally and regionally appropriate nutrition and physical activity interventions for a variety of racial and ethnic populations. They were funded and operated by a combination of government, state, and territorial health departments and tribal agencies. Program participants were screened for high blood pressure, high cholesterol, abnormal glucose, and obesity. Many were also screened for tobacco use, poor dietary habits, and sedentary lifestyle, in order to better provide unique, culturally relevant intervention strategies for the specific cohort. This large-scale study was designed to evaluate the effectiveness of "enhanced" risk reduction interventions, compared with "minimum" interventions or usual care. Minimum intervention was defined as baseline screening for CVD risk factors and minimal on-site counseling, education, and referral. Repeat screening was recommended at 6 and 12 months. Women enrolled in the "enhanced" intervention received all services of the minimum intervention plus specially designed community-based education tailored to the population, including racial, ethnic, and age considerations. These projects used a combination of developed resources that were adapted for the local environment. Examples include the following:

 

* New Leaf: A comprehensive risk reduction program designed for a Southern, multiethnic, low literacy population

 

* Vida Saludable, Corazon Contento: A Spanish-language adaptation of New Leaf used in North Carolina

 

* Traditions of the Heart: An adaptation of New Leaf used in Alaska, which was revised to include a 12-week, interactive group program incorporating Native Alaskan tradition

 

* Physician-Assisted Counseling and Evaluation: A program used in Connecticut to promote physical activity

 

* Active Living Every Day: A program used in South Dakota to promote physical activity

 

* ABCs for Good Health: Developed by the US Department of Agriculture and was coupled with the 10 000 Steps Program in Nebraska.

 

 

The results of this multicenter, multiethnic study showed that those who had obtained the enhanced interventions reported less fat in their diet and improvements in cholesterol panels, blood pressure profiles, and smoking cessation. The study reported that cultural adaptation involves much more than translation of documents and must include identifying barriers to change cultural norms. Some of these include such factors as social isolation, unsafe neighborhoods, and lack of access to healthful foods. The benefits of extending participation to family members and friends, using local community health workers who could encourage attendance, arranging transportation, providing child care, encouraging exercise in safe environments (eg, YMCA, local indoor swimming pools), and extending hours for participation were also reported.23-25

 

Community-Based Participatory Research

Community-based participatory research is neither a research design nor a method, but rather an orientation or an approach to conducting research in partnership with a community. It may be used in observational (nonexperimental) or experimental research and may incorporate quantitative and/or qualitative methods.26 Community-based participatory research has been defined as a "systematic inquiry, with the participation of those affected by the issue being studied, for the purpose of education and taking action or effecting social change."27

 

Debate is present regarding terms that represent different ideological stances and historical traditions of various approaches to CBPR.28 There are, however, certain core principles and values that have evolved over time and transcend these variations. These principles include working with existing communities; building on strengths and resources of the community; facilitating collaborative, equitable partnerships; promoting mutual learning and capacity building among partners; and considering health issues in an ecological context, with explicit recognition of the multiple determinants of health and disease. Competence is developed through an iterative, cyclical process designed to be sustainable and committed to continuing work over the long term, with dissemination of knowledge and findings to all partners.29

 

There is increasing recognition of the value of CBPR, particularly as an approach to addressing health disparities in areas of research that require behavioral and/or environmental changes to prevent or ameliorate a health problem. Sustained efforts using participatory approaches to address environmental issues have been published. Recently, investigators interested in the prevention and control of CVD have been challenged to move CBPR into the mainstream of preferred research approaches.30

 

Variations in Design and Examples of CBPR Focused on Prevention of Cardiovascular Disease

Examples of CBPR focused on primary or secondary prevention of CVD have been published. The studies included in this section are (1) research described by one of several terms that included the word "participatory"; (2) studies using 1 or more strategies that incorporated CBPR principles in the design, implementation, and/or dissemination of the research; (3) studies focused on some aspect of primary or secondary prevention of CVD; and (4) studies published in English. These examples do not necessarily represent the full spectrum of relevant research. Studies done in countries outside the United States and Canada may be underrepresented.

 

In Table 2, examples of CBPR strategies are presented by stage of the research process. Five studies provided examples of involvement of the community in planning and oversight.31-35 Community involvement in assessment and/or building community capacity to engage in research was illustrated in 5 studies.32,36-39 Community participation in the study implementation stage of research, including community members' involvement in the design and delivery of interventions in experimental studies, was evident in 4 studies.31,35,40,41 Three studies provided examples of community members' involvement in analysis and/or interpretation and dissemination of data.32,37,42 Several studies involved CBPR strategies in more than 1 stage of the research process; 2 additional reports described CBPR strategies in all stages.43,44 There were more examples of community participation in earlier than in later stages of the research process. This is similar to the trend observed for the broad range of CBPR research,45 not just those focused on CV health. Various research approaches were used including qualitative or descriptive approaches, ethnographic studies, observational studies based on survey data and other measurements, and experimental designs (Table 2). Some of the studies were classified as "methodological," because they focused on development of an intervention or measurement.

  
Table 2 - Click to enlarge in new windowTABLE 2 Examples of Community-Based Participatory Research Studies for the Prevention of Cardiovascular Disease, by Stage of Research
 
Table 2 - Click to enlarge in new windowTABLE 2 Examples of Community-Based Participatory Research Studies for the Prevention of Cardiovascular Disease, by Stage of Research, continued

There are some barriers to dissemination of CBPR. Scientific rigor may be compromised in some instances in favor of approaches that are compatible with the community's values and norms. Because CBPR usually involves recursive processes, rather than a linear approach to research design and methods, it may be difficult to report CBPR using standard manuscript headings (background, methods, findings, discussion). Journal reviewers may not be familiar with the principles of CBPR, which complicates finding appropriate reviewers and publication outlets. Despite said barriers, CBPR demonstrates a promising research modality to use in focusing on the disparities existing among CVD prevention and how it relates to specific communities on both a local and global scale.

 

Building Community Capacity for Participation in Genetic Research in Cardiovascular Disease Prevention and Reducing the Potential for Harm/Exploitation

Cardiovascular disease arises from a complex web of causes that encompass genetic and environmental factors and their interactions. Although familial patterns are discernable, the mode of inheritance is complex, with many genetic factors involved. Each genetic factor may make a small contribution to risk of disease and operate in concert with combinations of other genetic factors and environmental risks, including lifestyle behaviors.46,47 Understanding this complex web of causative factors is necessary to refine strategies for preventing or delaying the pathophysiologic processes that lead to clinically apparent CVD states.

 

Genetic studies of any of the complex diseases, including CVD, require large samples and access to diverse populations. Review of the literature on participation in genetic studies indicates that much of the research on building community capacity for participation and reducing the potential for exploitation and harm is not disease specific. Common themes that emerged included analysis of (1) building capacity through community engagement and consultation, (2) ethical issues related to ongoing genetic studies as well as biobanking of specimens for future studies, and (3) sharing benefits of genetics research.

 

Building Capacity Through Community Engagement and Consultation

In building capacity for participation in genetics research, it is important to consider values, beliefs, literacy, experience, knowledge levels, and preferred learning styles of the population.48 For instance, an article evaluates Hindu perspectives on genetic research in an Indian American community in Houston, Texas.49,50 Another explores the opinions of African Americans regarding genetic testing. More negative views were elicited from African Americans when compared with white participants in a genetic epidemiology study of risk for colon cancer. After controlling for confounding factors, African Americans were more likely to believe that genetic research would result in higher insurance, reinforce racism, not benefit minorities, and that minorities are more likely to be used as "guinea pigs" in research.49,50 To address these and other related concerns of discrimination and exploitation of minorities in genetic research, there is increasing momentum to develop models of community engagement to educate, build consensus, and empower individuals and communities in policy making for genetic research.51

 

Community engagement can range from investigator-controlled advisory panels, to more equitable partnerships between researchers and community leaders and members. The Marshfield Clinic Personalized Medicine Research Project in the United States (Wisconsin) engaged the community throughout the process for a population-based biobank, from the planning stages through to dissemination. Central to this community engagement was the formation of a community advisory group. This group, composed of 19 members residing in the target zip codes, was advisory to the researchers, with the agenda set by the principal investigator. They served as a sounding board to review alternative approaches in the community, recruitment strategies, issues of confidentiality, incentives for participation, and frequency of contact with participants.52 In contrast, the Healthy Environments Partnership, which investigated the prevalence of biologic risk factors of CVD and social and physical environmental exposures as mediators of risk-factor inequalities, involved the community collaboratively in all stages of the research process.43 It was affiliated with the Detroit Community Academic Urban Research Center, with participation of public health and academic institutions, as well as health services and community-based organizations.53

 

Ethical Issues Related to Genetic Studies and Biobanks

In the United States, biobanking of specimens is taking place to provide an infrastructure of data for ongoing and future studies.54 Increases in genetic research since the completion of the human genome project and in biobanks for the collection and storage of human tissues and cells have brought ethical issues into focus.

 

Although informed consent has driven the efforts to protect the rights of humans involved in research, the establishment of biobanks has challenged traditional methods and norms for obtaining consent of participants. In some cases, participants are asked to give blanket consent for all future studies using their specimens. In other studies, samples are deidentified, and the study is declared exempt from the requirement for informed consent. The fact that it is impossible to deidentify genetic information is one of the critical ethical issues in the current debate on making genetic databases publicly available.55,56 On the other hand, public availability of large genetic databases is considered essential for progress in genetic research and personalized medicine, including pharmacogenomics. The latter provides a basis for tailoring specific interventions and drugs to those individuals who have the genetic propensity to respond to them.57 Tiered consent procedures are emerging, along with additional safeguards to protect privacy and to reduce the potential harm associated with breaches of privacy.56 Opinions on these and other issues related to informed consent for biobanking were reported in recently published studies.58,59

 

In population-based research, it is important to involve community leaders, obtain their approval, and to then engage with the community as a whole before approaching potential participants in genetics research.48,60 Although there is the potential for a population to benefit from participation in genetic research, there is also the potential for harm, exploitation, and stigmatization for populations that provide biological samples for genetic research. A recent legal settlement between a Native American tribe and a university in the United States illustrates this potential for harm.61 Controversies arose surrounding the future uses of genetic samples beyond the research topics included in the informed consent process. Removing donors' identifying information from the samples did not eliminate the risks to the population. Thus, the ethical debates continue regarding risks and benefits of genetic research for populations, as well as the processes for obtaining informed consent for future uses of stored samples.

 

Sharing Benefits of Genetics Research

Genetics research is proliferating in both developed countries and developing countries with limited resources. Caution is necessary to ensure that populations from countries with limited resources are not exploited as participants in genetics research that will benefit only populations from developed countries.62 Patenting of biological entities such as genes and single-nucleotide polymorphisms raises questions about whether participants or communities should share in profits for use of their biological materials in research and development.48,63

 

Community-Based Translational Research

The usual route for translational research is from the "bench" (basic research) to the "bedside" (clinical research) and back. Although this is an important route, the more challenging translation for population health is the route from the bench or the bedside to the community and back. With the bedside as the primary destination, attention is placed on disease states and their treatments. For translational research to have an impact on population health through prevention of disease and promotion of health, translation to the community is essential.64

 

Interventions to prevent disease are subjected to the same rigorous tests as clinical research in humans, the randomized controlled trial. However, when interventions are found to be efficacious under ideal circumstances, they are rarely tested further to demonstrate effectiveness under "real world" conditions or for feasibility of broad dissemination in the community. Furthermore, many interventions that have been efficacious in the short term are not sustainable over the long term. Much of the effort to prevent CVD and the corresponding research initiatives are focused on interventions to change behavior at the individual level. There is increasing recognition that the contexts in which health behaviors occur have a powerful influence on their likelihood of occurring. For example, consider the relationship between salt consumption and its link to elevated blood pressure. Individuals can be taught and even motivated to consume less salt, but how easy is it to enact that behavior in an environment of processed foods? Social-ecological models that incorporate multiple layers of influences on health behaviors are framing many community-based, translational research studies for the prevention of CVD.65,66

 

Genetic-Environmental Interactions and Implications for Population-Based Cardiovascular Disease Prevention

The clinical manifestations of CVD are end points of a complex set of processes that are affected by multiple factors and mechanisms. Coronary artery disease, as conceptualized by Lanktree and Hegele,67 is the result of inflammation, coagulation, dyslipidemia, dysglycemia, hypertension, plaque growth, instability, and so on. Each of these processes may be fueled by a complex set of genes that may be responsive to environmental factors such as infection, stress, exercise, diet, smoking, and chemical exposures. A new era of CVD prevention will emerge with the increasing understanding of gene-gene and gene-environmental interactions.

 

Needed: Community-Based Research for Implementation of Cardiovascular Disease Prevention

Community-based participatory research is an approach to qualitatively and quantitatively evaluate local population patterns related to the environment they live in as well as how that environment persuades their lifestyle. This style of research can be applied to CVD prevention when considering how to effectively reach a local community. Several questions one might consider for guidance in reaching a specific community include (1) what tool to promote CV health and CVD prevention is best suited for this population considering socioeconomic status and culture? And (2) what is the biggest deterrent to promoting CVD prevention in this community? Ultimately, CBPR shows great promise as an up and coming valuable commodity to the prevention of CVD at the local and subsequently global level.

 

A unique opportunity exists to incorporate CBPR and community-based genetic research. This is an emerging concept not only in the setting of CV risk and CVD prevention but also in genetic research as a whole. Research examining gene-gene and gene-environment interactions will certainly guide future CVD prevention efforts at a local and global level. However, it remains to be seen exactly how this promising modality will manifest itself in the field of CVD prevention as researchers address some of the remaining questions surrounding consent, ethics, and benefit sharing.

 

Conclusion

Cardiovascular disease is attributable to both genetic and environmental factors that share a closely intertwined relationship. Community-based programs providing culturally and socioeconomically relevant guidance that focuses on diet modification, physical activity, and smoking cessation are key to changing environmental factors that link local and global populations to CVD. Several large-scale successful models have been outlined including the AHA's guide for improving CV health at the community level and the International Heart Health Network's policy framework for population approaches. All health care professionals, local workforces, faith-based organizations, and nurse managed risk reduction programs are important to the development and implementation of community-based programs. Given the target audience of this article, it should be noted that nurses in particular have the opportunity to become community leaders in CV health promotion. Equipped with knowledge and specialized training in health promotion, nurses are perfectly positioned to direct, guide, and implement these community initiatives. Nurses must demand policy change and involve themselves in implementing diet modification, smoking cessation, and increasing physical activity among all age groups within their communities. Ultimately, the goal of all health care professionals should be to penetrate the places people work, socialize, and spend their free time with education and guidance regarding a lifestyle that will positively affect their health and is the first step to changing CVD risk and ultimately the mortality of an entire community.

 

Summary and Implications

This manuscript addresses community-based and public health prevention initiatives. Specifically addressed are initiatives for CVD prevention at the community level, community policy changes needed to promote CVD prevention, CBPR, and CVD risk stratification models. Each of these initiatives poses a "call to action for nurses and nursing" and will involve specific nursing activities, strategies, and nursing research to address better outcomes in CVD prevention.

 

Acknowledgment

The authors thank Isabel Cruz, PhD, RN, Fluminense Federal University, Rio de Janeiro, Brazil, for her suggestions in this manuscript.

 

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