Day 2 Session 3: The Politics of Engagement (Discussant: Javier Lezaun)
Place, People and Power: Basic Concepts of People’s Lifeworld in Community Engagement for Malaria Elimination
Decha Tangseefa [1], Krishna Monthathip, Naruemol Tuenpakdee, Ladda Maelankiri, Myo Myo, Suphak Nosten, Andrea König, Lorenz von Seidlein, Phaik Yeong Cheah, Francois Nosten
[1] Faculty of Political Science, Thammasat University
Abstract
The recent emergence of artemisininresistant P. falciparum parasites is of the highest concern. In absence of more promising plans, it has been suggested to eliminate P. falciparum malaria from foci of artemisinin resistance. Part of a Targeted Malaria Elimination (TME) piloting project, this study investigated experiences of TME community engagement workers in four diverse villages along the Thai-Burmese border. As high participation is an imperative for TME, the purpose of this study was to maximize program participation of villagers through identifying basic concepts relating to people’s lifeworld relevant for ethical and effective community engagement. During the study period of two years (2013 2015), semistructured in-depth interviews with community engagement workers (N = 17) of the Shoklo Malaria Research Unit were conducted regarding their experiences in four TME piloting villages. Furthermore, the researchers joined community engagement workers during their activities and occasionally also interviewed villagers. An additional source were experiences of malaria elimination workers from the multi-institutional Malaria Elimination Task Force, recorded during community engagement workshops. Based on transdisciplinary guiding theories of political theory, philosophy and anthropology, P lace, People and Power were identified as three key concepts relevant to community engagement under the diverse, economically unstable, and politically fragile conditions along the Thai-Burmese borderland. They can facilitate as guiding concepts for community engagement for elimination interventions in post-conflict settings, contested areas, borders, and areas inhabited by mobile populations with a high diversity of peoples. Diversity, mobility, capitalization and crumbling social cohesion will be challenges to community engagement for malaria elimination in the future.
Is “doing harm” inherent to engagement: A perspective from an LGBT-rights NGO in Malawi
Gift Trapence [1] and Crystal Biruk [2]
1. Executive Director, Centre for the Development of People (CEDEP)
2. Oberlin College
Abstract
This paper, written from the collaborative perspectives of an anthropologist and an activist-researcher and director of Malawi’s LGBT-rights NGO, considers the effects of rising demand for statistics and data on key populations in sub-Saharan Africa—such as men who have sex with men (MSM)—that can inform “evidence-based” interventions and policy. Drawing on experience implementing a respondent-driven sampling (RDS) study of MSM in a number of districts in Malawi, we highlight how the push for timely data by foreign partners and local institutions such as the National AIDS Commission (NAC) can endanger the very communities these organizations aim to help. Indeed, such rapid research, often implemented in the absence of meaningful investment in infrastructure on the ground, can have the paradoxical effect of placing MSM at risk not only of the HIV and STIs the research seeks to measure, but also of becoming known in their local communities. The paper will examine the social and political context that shapes the ways in which this kind of research is carried out in a low-resource setting characterized by widespread homophobia.
Ignorance and Knowledge: Women Sex Workers and HIV Prevention in India
Mangala Subramaniam [1]
1. Associate Professor, Department of Sociology, Purdue University, 700 West State St., Stone Hall, West Lafayette, IN 47907 (USA).
Abstract
Studying sex work, the exchange of sexual intimacy for money and support, present researchers with complicated issues to confront. While ethnographic data can provide insights into the daily lives of marginalized populations of interest, interviews, although time-consuming, allow participants such as women sex workers (WSWs), to reflect and narrate in detail their struggles and in this study the access to resources key to HIV prevention. Engaging in conversations with WSWs involves not only relations of power between the researcher and the researched. These conversations are about information shared by the WSW and the ‘community’- the community of the high risk group of WSWs. The researcher is compelled to engage with local structures of power within the community to unravel the research participants’ ignorance and knowledge of their rights and risks. How does the researcher navigate local politics and handle ignorance and knowledge to gather data about WSWs daily lives that are fraught with risks to health and life? I address this question by drawing on my research - conducting in-depth interviews with WSW participants in a community organization in Bangalore (India). Bangalore is the capital city of the state of Karnataka (India) which is one of six states categorized as high-risk.
Biotechnology and primary healthcare: community engagement in oncology clinical trials in Cuba
Nils Graber [1]
1. PhD student in Medical Anthropology, Cermes 3, EHESS/INCa, France
Abstract
Since the 1980s, the national Cuban biotechnology industry is developing innovative biopharmaceuticals, in particular cancer immunotherapy drugs (monoclonal antibodies, cytokines, and therapeutic vaccines). Created in 1994, the Center of Molecular Immunology (CIM) is focusing on this oncological approach. As a “Socialist enterprise of high technology”, CIM is dedicated to undertaking basic and clinical research, production, marketing, and public health aspects of its pharmaceutical products. After having conducted many early-phase clinical trials to assess safety and efficacy of these drugs, CIM and public health authorities have recently started advanced clinical trials at the level of polyclinics, namely primary healthcare centers. In this research apparatus, family doctors and nurses have a central role, by following patients and providing data on the ground. It is considered as a public health intervention, which mainly aims to assess the impact of cancer immunotherapy at a population level in terms of 'cancer chronicisation'. Building on an ongoing ethnography of primary healthcare oncology clinical trials, this paper will analyze how community healthcare is entangled and reshaped in this apparatus. While the clinical trials designers consider ‘community’ as a rather passive category, I will show how local practices are building a form of community engagement. These emerging practices are linked to both family doctors’ initiatives and to the spatial characteristics of polyclinics, which give a specific visibility of cancer patients. I will argue that this research apparatus contributes to transforming both the embodied experience and community awareness of cancer, which still constitutes a 'taboo' in Cuban society.
Brokering Engagement: Domestic Nongovernmental Organizations and Transnational Knowledge Production
Yan Long [1]
1. Indiana University, Bloomington
Abstract
While lots of global health research is conducted in middle- and low-income countries, researchers from high-income countries often have to rely on brokerage as a transnational hinge to gain access to and communicate with local communities in the foreign context. By brokerage, I refer to the linking of previously unconnected global health research and local communities by a unit that mediates their relations with one another and/or with yet other parties. Domestic nongovernmental organizations (NGOs) are increasingly becoming an important type of agents of brokerage especially in the authoritarian context where community engagement is much more challenging. In particular, this paper examines the formation of brokerage and its impact on community engagement by drawing on a case study of HIV/AIDS research in China.
Based on ethnographic and archival data, this article demonstrates how China’s particular historical and political environment enabled Chinese NGOs especially those in urban areas to take on four kinds of brokerage roles as translators, coordinators, articulators and representatives in global health research. I illustrate how successful outcomes depended on domestic NGOs’ ability to leverage their networks, alliances, political and cultural resources as to help western researchers to operate at sites that were otherwise hostile to foreign actors. While this process channeled the voice of certain urban communities into the transnational networks of scientists and policy experts, it hindered people living with HIV/AIDS in rural areas in transnational engagement. Paradoxically, it is when mediating skills were most needed that they seemed to be hardest to accomplish for NGOs.
Religious Leaders Become Allies within the Context of the HIV Epidemic in Kenya
Evans Gichuru [1], Esther Adhiambo [5], Clifford Duncan Okoth[5], Salla Sariola [6], Monique Oliff [3], Eduard Sandersa [2,7], Elise M. van der Elst [1,2]
1. Kenya Medical Research Institute – Wellcome Trust Research Programme, Kilifi, Kenya
2. Department of Global Health, Academic Medical Centre, University of Amsterdam, the Netherlands
3. Wellsense International Public Health Consultants
4. Nuffield Department of Population Health, University of Oxford, Oxford, UK
5. Persons Marginalized and Aggrieved (PEMA Kenya)
6. Nuffield Department of Population Health, University of Oxford, UK
7. Nuffield Department of Medicine, University of Oxford, Oxford, UK
Background
In Kenya, Men who have Sex with Men (MSM) are considered un-Christian and un-African. 15.2% Of the new infections in Kenya are through male homosexual contact. Therefore, it is crucial to identify and engage supportive religious and community leaders to reduce stigma and discrimination and promote access to HIV services for MSM. Kenya faces deep tensions between religion and state on this matter. We tested a Community Engagement (CE) model that used a consensus-building community-based participatory approach. Here we report on phase 1, the formative work of this intervention.
Methods
Thirteen religious leaders from a mix of religious groups and denominations (Catholic, Muslim, Adventist, Anglican and Protestants faiths) in Mombasa were recruited as “community engagement agents” (CEAs). Together with PEMA-Kenya - a LGBTI-led CBO in the Kenyan Coast - and members of the KEMRI-IAVI research group, a working group was formed to discuss, and challenge stigmatizing religious beliefs that often increase HIV vulnerabilities amongst MSM. Twelve training sessions were conducted, and offered the religious leaders space to vocalize their fears and questions about MSM. Lessons learned from the 12 week working group are currently being used to develop a sensitization- and training intervention for religious leaders, whereby religious leaders’ CEAs will implement the training and be encouraged to form “community stakeholder allies”. Phase 3, will use pre-mid-and post assessments to evaluate the process and change in attitudes.
Results
Based on the consensus-building participatory approach, which aimed to increase the level of knowledge about HIV (transmission, detection, treatment, risk) and sexuality, and reduce religious leaders’ level of prejudice. The following key outcomes were identified and will feature in the second phase: 1) development of an understanding of differences between people, lifestyles and the consequences of prejudice/discrimination/isolation; 2) a perspective of the out-group within religious frameworks, developing a multifaceted view of the situation for MSM and its complexity for the individual and the broader society; 3) empathy and compassion; 4) self-knowledge & self-disclosure; 5) finding a zone of comfort – despite residual ambiguity with regards to self and other; 6) initiation of trust, openness, and friendship in order to reduce anxiety about interacting with an out-group; and 7) the development of an ‘I can’ have a conversation with a gay man - ‘I can’ begin to contemplate tolerating the situation that previously I would have resisted - moving to a group commitment, or ‘we can’ attitude within the group. This concrete and public step of linking the religious leaders psychologically to the out-group is key to sustaining reduced prejudicial attitudes. A protocol is under development to conduct the intervention. Key indicators will be measured at baseline, midterm and at the end of the interventions to determine if this kind of targeted intervention can improve access to care for MSM (phase 2/3).
Conclusion
This formative work demonstrated religious leader’s willingness to be engaged on MSM/HIV issues, to raise awareness about HIV/AIDS, combat stigma, and provide a holistic approach for Kenyan MSM living with HIV to access health and social support. While some religious leader participants embraced the CEA’s concept, others are still uncertain of how to move forward. KEMRI recognizes further work is needed to change attitudes.