Elsevier

Social Science & Medicine

Volume 61, Issue 12, December 2005, Pages 2577-2587
Social Science & Medicine

Community-based participatory research (CBPR) in South Africa: Engaging multiple constituents to shape the research question

https://doi.org/10.1016/j.socscimed.2005.04.041Get rights and content

Abstract

Community engagement is an on-going, arduous, and necessary process for developing effective health promotion programs. The challenges are amplified when the particular health issue or research question is not prominent in the consciousness of the targeted community. In this paper, we explore the community-based participatory research (CBPR) model as a means to negotiate a mutual agenda between communities and researchers.

The paper is focused on the (perceived) need for cervical cancer screening in an under-resourced community in Cape Town, South Africa. Cervical cancer is a significant health problem in this community and elsewhere in South Africa. Unlike HIV-AIDS, however, many Black South Africans have not been educated about cervical cancer and the importance of obtaining screening. Many may not consider screening a priority in their lives.

Our research included extensive consultations and informal interviews with diverse community and regional stakeholders. Following these, we conducted 27 focus groups and 106 demographic surveys with randomly selected youth, parents, local health care personnel, educators and school staff. Focus group data were summarized and analyzed cross-sectionally. Community stakeholders were involved throughout this research.

Our consultations, interviews, and focus group data were key in identifying the concerns and priorities of the community. By engaging community stakeholders, we developed a research framework that incorporated the community's concerns and priorities, and stressed the intersecting roles of poverty, violence, and other cultural forces in shaping community members’ health and wellbeing. Community members helped to refocus our research from cervical cancer to ‘cervical health,’ a concept that acknowledged the impact on women's bodies and lives of HIV-AIDS and STDs, sexual violence, poverty, and multiple social problems. We conclude that the research agenda and questions in community-based health research should not be considered immutable. They need to be open to negotiation, creativity, and constant reinvention.

Introduction

The development of a research question is a critical process in any research project (Elden, 1987). It is particularly critical in community-based research, where questions formulated without the input and involvement of community stakeholders can undermine the research and its chances of success from the outset. In this paper, we examine how the community-based participatory research (CBPR) model can be used to develop, refine, and give momentum to health education and promotion efforts in their early phases. We illustrate how, through informal interviews, focus groups, and a series of field visits, we shifted our narrow interest in the risk factors for cervical cancer to a broader emphasis on “cervical health” that is grounded in the larger context of community health and wellbeing.

By engaging community stakeholders, we developed a research framework that incorporated the community's concerns and priorities, and stressed the intersecting roles of poverty, violence, and other cultural forces in shaping community members’ health and wellbeing. In reframing our research interest as “cervical health,” we acknowledged that women's health in South Africa extends well beyond epidemiological factors, and includes HIV-AIDS and STDs, sexual violence, poverty, and multiple other social problems. This paper discusses how the CBPR model can help ground a study in local interest and support, forge key partnerships, and promote mutual credibility and trust. The paper concludes with a number of recommendations to community health researchers and educators seeking to adopt the CBPR approach, particularly in low-resource, “democracy conscious” communities.

CBPR may be viewed as part of the continuing drive in social research to transcend academic boundaries and shift toward interdisciplinary collaborations (Stoecker & Bonancich, 1993). Beyond knowledge production, CBPR seeks action and change as its primary goals, simultaneously functioning as both research and service (Petras & Porpora, 1993). CBPR is described as using the social sciences to advance the “democratic process” (Bailey, 1992). In public health, community-based participatory methods derive from a renewed focus on the social, political, and economic behaviors that impinge on health behavior and influence access to local resources (Israel, Schulz, Parker, & Becker, 1998). CBPR is an effective way to understand urban health issues ecologically, through consideration of the social and environmental contexts in which these issues are embedded (Higgins & Metzler, 2001). However, the CBPR approach may not be applicable in all research environments and the continuation of independent, scholarly research methodologies to evaluate health issues remains essential.

One of the greatest challenges of early stage CBPR lies in establishing trust in communities that are inherently suspicious of university or other “outside” involvement. As Reardon and colleagues have pointed out, communities may sense that academics use other people's distress to justify grant money, which produces money for faculty but has little lasting impact on the community (Reardon, Welsh, Kreiswirth, & Forrester, 1993). This is a prominent issue in South Africa. As Nama and Swartz (2002) have pointed out, local communities in South Africa are “very much aware of the fact that in the past researchers (who were mainly White) would collect data on impoverished people without making any contribution to improvement of their lives. (p. 289)” South African academics in the past frequently approached poor communities, and the idea of “community” itself, as a testing ground for dubious academic claims about race, culture, and social cohesion (Thornton & Ramphele, 1988). Since the late 1980s in particular, communities in South Africa have been very vigilant about this form of exploitation (Nama & Swartz, 2002). Increasingly, researchers in South Africa and other parts of the developing world can gain access to communities only after consulting with local stakeholders, who will want assurances that the research is ethically sound and respectful of local concerns and norms, not exploitive, and committed at some level to the wellbeing of the community (Marshall & Rotimi, 2001; Quinn, 2004).

Given South Africa's sociopolitical environment, CBPR seems an almost natural and obvious fit. Owing to the country's recent political history, many South African communities embody the CBPR principles of collective action and mobilization. The ethos of political change in South Africa has been participatory. Similarly, credible research efforts are expected to follow a participatory and “democratic” process. There is widespread agreement, for example, that community health promotion and education programs, including those directed at the country's HIV epidemic, should be participatory and aimed at helping communities “take ownership” of the health problems and resources involved (Campbell, 2003). Consequently, there is a strong tradition of using various community-based, participatory and empowerment strategies to conduct research (Campbell, 2003; Motteux, Binns, Nel, & Rowntree, 1999; Williams et al., 2000; Campbell & Mzaidume, 2001). Furthermore, many community organizations and structures formed to challenge apartheid, function among their other roles, as gatekeepers intent on protecting communities from exploitive, non-participatory, or purely theoretical research.

CBPR's commitment to placing health issues in their social, political, and economic context resonates strongly with the South African stakeholder. As our data will show, many South Africans are acutely aware of the link between their health and wellbeing and the country's history of social, political, and economic discrimination. Projects that ignore or disavow these contextual ties are not likely to gain the full interest, support, and trust of the community.

The CBPR principle of seeking fundamental change also overlaps with the ongoing shift in South Africa toward community-based, primary health care (Benatar, 2004).

From a CBPR perspective, research questions should be formulated from the outset with direct input from and democratic engagement with communities. In our case, the dictates of available funding, our own research interests and expertise, and the high incidence of cervical cancer among Black and Colored women in South Africa led to our initial decision to explore the risk behaviors for cervical cancer, which include early onset of sex, sex with multiple partners, and cigarette smoking (Bosch, Munoz, & Sanjose, 1997; McBride, Scholes, Grothaus, Curry, & Albright, 1998). We aimed to conduct our research in an urban area located on the outskirts of Cape Town. This community is also one of the few ethnically diverse neighborhoods with considerable numbers of Blacks and Coloreds. This diversity lends itself to an exploration of ethnic and cultural differences and their relationship to people's knowledge about and responses to the risks of developing cervical cancer.

In South Africa, cervical cancer is the most common cancer in Black women, the second most common in Colored and Asian women, and the fourth most common in White women (CANSA, 2003a). Rates for White South Africans are comparable to those found among Whites in the UK or US (CANSA, 2003b). The lack of screening resources is a particular problem in South Africa. Recent reports suggest that older, poor women living in the Cape Town area are particularly at risk for developing cervical cancer because they are not being reached through opportunistic screening efforts (Bradley, Risi, & Denny, 2004).

Efforts are now underway to improve women's access to screening, minted by the South African government's new cervical cancer screening policy that promises women 30 years and older three free pap smears in their lifetime (DOH, 2002). However, the effective and uniform implementation of this policy is not without expected difficulties. For example, a report in a Cape daily newspaper stated that at least one-third of women in Cape Town are still not being screened for cervical cancer (Smetherham, 2003). Problems include a low demand for screening among women, a nationwide shortage of nurses, overworked staff, and a lack of coordination among local, regional, and state administrations (Crawford & Everett, 1999). We therefore felt it was essential to consider primary behavioral prevention options for cervical cancer, including the possibility of educating young girls about the risk behaviors for cervical cancer.

Section snippets

Methods

We conducted a series of informal interviews, focus groups, and field visits to explore the feasibility and appropriateness of developing a cervical cancer prevention effort focused primarily on adolescent girls. Below, we describe our research methods in more detail.

Informal stakeholder interviews and field visits. In March 2002, as part of our initial effort to engage local stakeholders, we visited the community and met with a wide range of people, including local health professionals, school

Results

One hundred and eighty one (181) individuals participated in 27 focus groups.

Demographics of youth. One hundred and twelve students participated from four high schools. The average age was 15 and the majority (68%) was female. Most of them (74%) were eighth graders, 11% was in ninth grade and 15% was tenth graders. Almost half of them (47%) had lived in the community for 5 or more years while 19% had lived there for less than a year. Of the participants, 41% said that they speak Afrikaans at

Discussion

The goal of our research was to examine the multiple factors that affect the health and wellbeing of young school going girls in a peri-urban community in Cape Town. The goal was to explore and understand the context within which we needed to develop a primary prevention program focused on the risk behaviors for cervical cancer. However, due to the dynamic and cyclic nature of community-based research, our conceptualization of the research problem underwent a major transformation.

The voices of

Acknowledgments

This research was approved and supported by the Internal Review Board of University Hospitals and Case Western Reserve University (#07-03-35) and the Department of Education of the Western Cape. We could not have conducted this research without the cooperation and support of the focus group participants and facilitators, the high schools in the community, the two public libraries, and members of our reference team, among others. We would also like to thank Drs. Lynn Denny, Alan Flischer and

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