Summary
Community-based participatory research approaches can be useful for stimulating social innovation. Such approaches involve community members at various phases of the research process and have several positive outcomes for the research and communities. This paper discusses the community mobilization approaches that are at the heart of research on HIV and related issues conducted in a rural community in KwaZulu-Natal, South Africa. We present affirmation and acknowledgement as an innovative and empowering strategy in community mobilization, as it affirms community members’ voices, dignity, and agency concerning issues that affect their lives.
Introduction
Community-based participatory research (CBPR) approaches can be useful for stimulating social innovation. Such an approach involves community members at various phases of the research process and has several positive outcomes.1 Acknowledging community members’ views on issues that concern them counters the distrust and unintended harm caused by traditional “helicopter” research where there is little consultation, data is extracted, and feedback is often not given. Community involvement in research also assists with transfer of research knowledge and findings into actions that could lead to greater uptake of these ideas.2 Such an approach is especially important when working with communities who have been marginalized or stigmatized, so as not to reinforce the stigma or inflict further harm to people. In South Africa, considering the racialized history and persistent socioeconomic inequalities, community participation and engagement in research can help to manage the power dynamics between researchers and community as these interactions may amplify historical or current differences.
Aim and Outline
We have used CBPR approaches to inform our work in a rural community in KwaZulu-Natal, South Africa for the past 15 years. This community acts as laboratory for understanding social and health issues affecting communities such as these, as well as innovative ways of engaging with and addressing these problems. All studies conducted here rely heavily on formative work to shape and frame the interventions and studies conducted here. The aim of this paper is to discuss the community mobilization (CM) approaches that are at the heart of this work. We provide a brief overview of the model and discuss affirmation and acknowledgement as an innovative and empowering strategy in CM.
Community Mobilization
We developed a CM model to guide our community engagement efforts towards enhancing greater participation and uptake of research.3 Community mobilization involves the systematic inclusion of the maximum number of community members, including commercial and other institutions and organizations, to take action towards a common goal.4 These mobilization strategies, irrespective of the type of study, are culturally appropriate and respectful. Our model, based on current CM5 and engagement models,6 consists of four interconnected phases, namely range, recognize, recruit, retain, and sustain. Firstly, the range phase concerns determining the physical boundaries of the communities where a study will be located. Secondly, recognize involves identifying the community leaders, networks, decision-makers, and any other role players within communities. The third phase, recruit, concerns all the specific efforts to spread the mobilization messages throughout the community by the local community members. Lastly, retain and sustain involves the efforts to retain participants through the duration of the research and to nurture the collaborative relationship with the different community stakeholders.
Affirm and Acknowledge as Social Innovation
Social innovation is not always something brand new, but it can include ways of doing something differently in order to achieve different outcomes. In our work, we prioritize community involvement in making decisions about culturally appropriate ways of going about the research. This kind of community involvement goes beyond just acknowledging the community members’ input on issues of concern, but also acknowledges their ways and beliefs. It affirms their voice, dignity, and agency concerning issues that affect their lives. Through affirming and acknowledging, researchers can gain more insight as to why people would participate in research or interventions and understand why not. Moreover, researchers can gain insight into the dynamics that influence the daily lives of people -- the very aspects which the research and social innovations intend to address, change, or enhance.
Affirmation and acknowledgement is important from the outset and throughout the research process. We recognize the lived experiences of the particular community members where studies are located. We do this throughout the engagement efforts as we practice awareness of how various social, economic, cultural, and psychological or experiential factors may intersect and directly or indirectly affect participation in research.
We affirm community members’ views on issues that concern them. To this end, we have put various structures in place. Firstly, a community advisory board (CAB), consisting of voluntary representatives of various organizations and institutions in the target communities. Members on this structure acts as consistent sources of knowledge regarding the appropriateness of potential research, identifying potential barriers to participation, signalling appropriate ways to go about recruiting participants, and framing messages and findings. The approach to the work is participatory as we engage with, and recruit community members and key stakeholders into the research process to ensure that research questions develop out of the convergence of both science and practice. Research results both come from and return directly back to the people who need them most and can make the best use of them.
Even though CABs are common practice in community interventions, engagements need to be consistently facilitated with affirmation of local knowledge in mind and recognizing the strengths and influence of the community representatives on the board. We also construct a community working group that assists with identifying community-based organizations and social networks in the community; assist with mobilization efforts; and help to retain participants in studies. In this way, community members gain experience, which empowers them, and the study benefits as participants are reached in appropriate and accessible ways -- through their own networks within communities.
Conclusion
The genuine involvement and participation of community members in all facets of the research process can stimulate greater uptake and use of research. Communicating research findings in ways that speak to people can be transformative. This paper highlights that the ways of interacting with community members need to be affirming and acknowledging of their knowledge, dignity, and agency about issues that concern them. Structures like the CABs and community working groups enable us to reach people respectfully. By foregrounding community mobilization and participation in all our studies, we are able to address a large number of health and social problems encountered in the day-to-day lives of ordinary South Africans.
Works Cited
1 Wallerstein, Nina B., and Bonnie Duran. "Using community-based participatory research to address health disparities." Health promotion practice 7.3 (2006): 312-323.
2 Lazarus, Sandy, et al. "Lessons learnt from a community-based participatory research project in a South African rural context." South African Journal of Psychology 44.2 (2014): 149-161.
3 Fluks, Lorenza L., Ngubani, T., and Van Rooyen, Heidi E. “Community mobilization for HIV research and prevention: Process, strategies and researchers’ reflections.” Forthcoming.
4 Lippman, Sheri A., et al. "Conceptualizing community mobilization for HIV prevention: implications for HIV prevention programming in the African context." PLoS One 8.10 (2013): e78208.
5 Person, Bobbie, and David Cotton. "A model of community mobilization for the prevention of HIV in women and infants. Prevention of HIV in Women and Infants Demonstration Projects." Public Health Reports 111.Suppl 1 (1996): 89.
6 Suarez-Balcazar, Yolanda, Gary W. Harper, and Rhonda Lewis. "An interactive and contextual model of community-university collaborations for research and action." Health Education & Behavior 32.1 (2005): 84-101.