Community-Based Participatory Research Studies on HIV/AIDS Prevention, 2005- 2014
Steven S Coughlin*1,2
1Department of Preventive Medicine, University of Tennessee College of Medicine, Memphis, TN
2Current affiliation: Department of Community Health and Sustainability, Division of Public Health, University of Massachusetts, Lowell, MA
The recent literature on community-based participatory research (CBPR) approaches to preventing HIV infection in diverse communities was systematically reviewed as part of the planning process for a new study.
Published HIV prevention studies that employed CBPR methods were identified for the period January 1, 2005 to April 30, 2014 using PubMed databases and MeSH term and keyword searches.
A total of 44 studies on CBPR and HIV or AIDS prevention were identified, of which 3 focused on adolescents, 33 on adults, and
8 on both adolescents and adults. A variety of at-risk populations were the focus of the studies including men who have sex with men, African American or Hispanic men, and African American or Hispanic women. Few studies focused on Asian/Pacific Islander or American Indian populations in the U.S. Six studies employed CBPR methods to address HIV prevention in church settings. Many of the studies were limited to formative research (ethnographic research, in-depth interviews of key informants, or focus groups). Other studies had a pre-/post-test design, quasi-experimental, or randomized design.
Additional CBPR studies and faith-based interventions are needed with adequate sample sizes and rigorous study designs to address lack of knowledge of HIV and inadequate screening in diverse communities to address health disparities.
Keywords: Acquired Immune Deficiency Syndrome; African Americans; American Indians; Asians and Pacific Islanders; Hispanics; Community-Based Participatory Research; HIV
Over the past decade, a rich literature has developed on community-based participatory research (CBPR) approaches to preventing morbidity and mortality from human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS) in diverse communities [1-65]. Studies to date have involved African American, Hispanic, Asian/Pacific Islander, and white persons in the U.S., gay and bisexual men, intravenous drug users, sex workers, migrant workers, urban and rural residents, at-risk youth, and people from several countries around the globe. An increasing number of CBPR studies on HIV/AIDS prevention have used faith-based intervention approaches involving people identified through church congregations [4, 5, 9, 12, 18, 22, 23, 57, 62, 63].
Community-based participatory research methods are particularly useful for studying ways to prevent morbidity and premature mortality in population subgroups that are marginalized, stigmatized, or discriminated against in society, or who are otherwise unempowered. For example, CBPR approaches have been employed for health promotion research conducted in African American and Hispanic communities that face barriers to stopping the spread of HIV related to socioeconomic issues (for example, poverty and limited access to quality health care and education), distrust of the health care system, language barriers, and cultural differences from other groups that are targeted by service providers .
As part of the planning process for a CPBR study on HIV prevention among at-risk persons in the United States, a review was conducted of the published literature on this topic over the past decade. The goal of this literature review was not to determine whether CBPR is an effective approach for health promotion and addressing health disparities (which is already widely accepted) but rather to identify recent trends and developments in conducting CBPR research on the prevention of HIV in diverse populations including refinements and innovations in qualitative and quantitative research methods, frameworks, and educational interventions. The current article extends beyond previous reviews by including recently published studies and by including both qualitative and quantitative research.
Published studies that employed CBPR methods were identified using PubMed databases through MeSH term and keyword searches. Search terms included “community-based participatory research” and “HIV” or “acquired immune deficiency syndrome”. Inclusion criteria consisted of English-language articles published from January 1, 2005 to April 30, 2014 that described community-based participatory research to address HIV prevention or screening. Both formative research on HIV involving focus groups or in-depth interviews and intervention studies that had a pre-/post-test, quasi-experimental, or randomized design were of interest. Pilot studies were included. Although a majority of the studies were conducted in the United States, CBPR studies on HIV prevention conducted outside the United States were also included. Studies that dealt with
dental or oral health, treatment, hospice, or the evaluation of health services were not included. Studies conducted in a community setting that did not employ participatory research methods or community partnerships were also not included. For each article, authors, journals, year of publication, study population, geographic locality, methods, results, and limitations were identified.
A total of 53 articles met the inclusion criteria. The 53 papers described 44 studies on CBPR and HIV or AIDS prevention. Of the 44 studies, 3 focused just on adolescents and the remainder focused on just adults (n = 33) or both adolescents and adults (n = 8) (Table 1). A wide variety of at-risk populations were the focus of published studies including African American men who have sex with men (n = 1), Hispanic men who have sex with men (n = 2), Hispanic families (n = 2), heterosexual African American adults (n = 2), African American families (n = 5), and members of racially and ethnically diverse communities (n = 1). Only a handful of studies (n = 2) focused on Asian/Pacific Islander or American Indian (n = 1) populations in the United States. A total of 6 studies employed CBPR methods to address HIV prevention in church congregations or other faith communities. Two of the published studies involved educational interventions in chat room settings. Many of the studies (n = 31) were limited to formative research (ethnographic research, indepth interviews of key informants, or focus groups). Other studies had a pre-/post-test design (n = 7), quasi-experimental (n = 2), or randomized design (n = 4). As summarized in Table 1, many published CBPR studies are limited by small sample sizes, uncontrolled confounding, or the lack of a comparison group. Relatively few employed a rigorous study design such as a quasi-experimental study or a randomized trial. Although most of the studies were conducted in the United States, studies on CBPR and HIV prevention were also conducted in Yemen, Kenya, South Africa, Trinidad and Tobago, Great Britain, Canada, Australia, China, and the Philippines.
The articles on CBPR and HIV prevention highlighted in this review document the important information obtained through participatory research methods in diverse populations. Some studies have employed a rigorous study design such as a quasi- experimental study or a randomized trial. However, many published CBPR studies are limited by small sample sizes, uncontrolled confounding, or the lack of a comparison group. The generalizability of study findings is often unclear. Nevertheless, in the more than 30 years since HIV was first recognized as a pressing public health concern, CBPR approaches have proved to be an effective and flexible approach for addressing HIV prevention in diverse population subgroups. Although CBPR studies were initially conducted mostly among men who have sex with men in large metropolitan areas such as New York and Los Angeles, the studies summarized in this review follow more recent trends in the epidemic such as increasing HIV infection rates among African Americans who
Table 1. Community-based participatory research studies on HIV/AIDS prevention, 2005-2014.
live in rural areas of the southern United States, increasing rates among African Americans and Hispanics in different urban and rural areas of the United States, increasing disparities among young adults who are African American (particularly men who have sex with men), and increasing rates among women.
As a collaborative approach to research, CBPR equitably involves all partners in the research process . The CBPR approach often involves partnerships between academic and community organizations with the goal of increasing the value of the research product for all partners . In the past, social scientists and researchers who focused on disease prevention tended to approach studies of social phenomena and community problems with an “outsider’s approach” which distanced the research from the participants’ daily lives. The “outsider’s approach” was questioned by Kurt Lewin (1947) and Paulo Freire (1994), who proposed more participatory and inclusive approaches to research. Current perspectives seek to address the complexity of the human experience and the differential power that sometimes exists between academic researchers and research participants . CBPR is linked to other social justice-informed approaches to research that attempt to empower communities to address the root causes of inequality and identify their own problems and appropriate solutions . The CBPR approach strives to acknowledge and implement the participants’ needs, behaviors, and beliefs concerning their well-being [5,10]. CBPR takes into account the strengths and insights that community and academic partners bring to framing health problems and developing solutions. As noted by Corbie-Smith, et al. , minority communities should not be viewed as deficient as all communities have unique strengths and resources that should be supported and built upon in order to increase community capacity and design sustainable health interventions.
Several studies identified in this review show that evidence- based HIV prevention interventions can be successfully adapted for new cultural groups without compromising fidelity to the core intervention components . For example, the Familias: Preparando a la Nueva Generacion parent curriculum developed by Parasi et al. (2011) draws upon to efficacious programs for addressing drug use and risky sexual behaviors among youth while also incorporating perspectives of the local community. Many of the studies identified in this review illustrate how community members are often quite interested in playing a role in CBPR and helping to ensure that the educational interventions that are developed are tailored to the needs of their community. For example, Sanchez et al.  noted that the “Latino migrant workers wanted to participate in the cultural adaptation that would result in an intervention that was culturally relevant, respectful, response to their life experiences, and aligned with their needs.”
Information about the transmission of HIV and how HIV/AIDS can be prevented is available from the U.S. Centers for Disease Control and Prevention (CDC) . HIV is transmitted via certain body fluids—blood, semen, pre-seminal fluid, rectal fluids, vaginal fluids, and breast milk—from a person who has HIV. These fluids must come in contact with a mucous membrane or damaged tissue or be directly injected into the bloodstream (from a needle or syringe) for transmission to occur. In the United States, HIV is spread mainly by having anal or vaginal sex with someone who has HIV without using a condom or taking medicines to prevent or treat HIV (CDC) . Anal sex is the highest-risk sexual behavior. Vaginal sex is the second- highest-risk sexual behavior. Sharing needles or syringes, rinse water, or other equipment (works) used to prepare drugs for injection with someone who has HIV. HIV can live in a used needle up to 42 days depending on temperature and other factors. HIV may be spread room mother to child during pregnancy, birth, or breastfeeding. Recommendations to test all pregnant women for HIV and start HIV treatment immediately have lowered the number of babies who are born with HIV (CDC) .
HIV-related stigma impedes efforts to develop, implement and disseminate HIV education. In addition, HIV stigma contributes to reduced rates of HIV testing and engagement in treatment by African Americans . An increasing number of programs have shown that religiously tailored HIV education can effectively address HIV and HIV-related stigma in diverse communities. Examples include The Balm of Gilead’s National Black Church Week of Prayer for the Healing of AIDS, Broward County’s Churches United to Stop HIV, the Black Faith-Based Health Initiative, 2009, the Metropolitan Community AIDS Network, and Churches United to Stop AIDS . Two of the faith-based studies successfully addressed HIV stigma as part of the intervention activities. The results of these studies indicates that CBPR activities conducted in church settings can successfully mobilize faith communities to positively influence their members to extend compassion and support for people at-risk of HIV and those living with HIV and assist in advocacy efforts to eliminate injustices and discrimination against peopleliving with HIV .
The contributions made by faith organizations are critical to addressing the HIV/AIDS epidemic in diverse communities in the United States and in other countries. The AIDS National Interfaith Network, The Balm in Gilead, Inc., and the National Coalition of Pastors’ Spouses provide HIV/AIDS training and resources to African American faith communities. Numerous other faith organizations and institutions are addressing HIV prevention, access to screening and treatment, and otherwise providing assistance to people living with HIV at the local level. The black church in the United States has long played an important role in addressing social and economic injustices. Poverty, discrimination, and other injustices are part of the contextual factors that contribute to the spread of HIV in the African American community . As noted by Derose et al.”congregations are often the last to leave distressed neighborhoods, thereby shouldering much of the burden of meeting community needs, and they can raise awareness about community problems and resources.” The collective efforts of faith organizations at the local, regional, and national level are helping to address pronounced health disparities such as the relatively high HIV rates among African Americans.
Several of the studies identified in this review employed CBPR approaches to prevent HIV among sexual minorities such as gay men, bisexuals, transgendered people, and African American men who have sex with both women and women but who do not identify around their same sex behavior. Although gay communities in the United States and other countries made major reductions in high-risk sexual behaviors in the 1980s and early 1990s, rates of HIV and sexually transmitted diseases have increased in the United States since the mid-1990s . Epidemiologic studies showed that, by 2006, many new HIV infections were occurring among young men who have sex with men, particularly among those who are African American or Hispanic. Results from recent epidemiologic studies underscore the severity of the HIV epidemic among men who have sex with men . Several of the studies included in this review used CBPR approaches to prevent HIV among men who have sex with men. Some of the studies developed and examined the effectiveness of educational interventions conducted in chat room settings [19,41]. CBPR approaches for preventing HIV and encouraging HIV testing are evolving as new technologies such as the Internet and the rise of social media are changing ways in which people identify sex partners or seek information about how they can reduce their risk of sexually transmitted infections.
Only a handful of the studies identified in this review used CPBR approaches to develop and implement HIV prevention interventions tailored for American Indians, Asians or Pacific Islanders in the United States [13,20,64]. The number of Asian and Pacific Islanders in the United States is rapidly growing. Asian and Pacific Islanders are more likely than all other racial/ ethnic groups in the United States to be diagnosed with AIDS at the time of HIV diagnosis , underscoring the need for more CBPR studies on HIV prevention among Asian and Pacific Islander subpopulations.
Four of the studies included in this review used CBPR methods to successfully develop and implement interventions to protect sex workers and their clients from HIV infection [27,29,51,58]. Sex workers are an extremely vulnerable population who are at-risk for HIV, substance abuse, violence, and other health disparities. The low socioeconomic status of women in many societies increases the vulnerability of women to HIV and places them at risk for health disparities .
In summary, CBPR studies have been conducted in the past decade to address the increasing HIV infection rates among African Americans who live in rural areas of the southern United States, increasing rates among African Americans and Hispanics in different urban and rural areas of the United States, increasing disparities among young adults who are African American (particularly men who have sex with men), and increasing rates among women. World-wide, women account for over half of new HIV cases. Additional CBPR studies and faith-based interventions are needed with adequate sample sizes and rigor study designs to empower communities to address lack of knowledge of HIV and inadequate HIV screening in diverse communities in the United States and other countries that suffer from health disparities and preventable morbidity and mortality.
Cite this article: Coughlin S. Community-Based Participatory Research Studies on HIV/AIDS Prevention, 2005-2014. J J Commun Med. 2016, 2(1): 019.