Day 1 Session 3&4: The Relational Dynamics of Engagement (Discussant: John Manton)
Exploring the relational dynamics of community engagement in HIV vaccine research in a peri-urban community in South Africa
Anthea Lesch [1] and Leslie Swartz [1]
1. Department of Psychology, Stellenbosch University, South Africa.
Abstract
Many biomedical HIV prevention trials are being conducted in settings with high HIV prevalence. In South Africa, efforts to develop a safe and efficacious HIV vaccine have been underway since the 1990s. The process of developing an HIV vaccine is a long term endeavour that involves multiple stakeholders, ranging from global to local role-players. Community engagement is a crucial component in the clinical research process, impacting the buy-in and support of local communities. In South Africa, clinical research to test candidate HIV vaccines is conducted in resource-poor communities where the risk of HIV-infection is high. While promoting community engagement in the HIV vaccine research enterprise has been highlighted as an ethical and scientific imperative (Newman et al., 2015), at the coalface it challenges researchers to balance scientific and operational goals with community capacity-building agendas in these resource-poor communities. Viewing HIV vaccine research as primarily a scientific endeavour in which researchers and their expert knowledge control and structure the process, whilst community members contribute their local knowledge to achieve scientific goals, produces a limiting view of the role of communities in the research process. Further, it ignores the fact that clinical trials are fundamentally about social relationships (MacQueen, 2011). Scientific research is social, political and deeply embedded in the social context in which it is conducted (Scott & Gibbons, 2001). When scientific research moves out of the laboratory into community settings it is transformed from a scientific experiment into a social process that is deeply rooted in the social, political and economic context of the local community. It becomes an integral part of the local community context and the complex dynamics and networks of social relationships that constitute it. Using the case of HIV vaccine research at one research centre in a peri-urban community in South Africa, in this paper I discuss the relational dimension of community engagement in HIV vaccine research. I locate my discussion in the community mobilisation approach outlined by Campbell and Cornish (2010). In my discussion I explore the network of social relationships that structure the participatory process and the roles, responsibilities and levels of participation available to those who are involved in the community engagement process. I present my exploration from the perspective of three key stakeholder parties who are involved in the process at the local community level, namely, community members who participate in HIV vaccine research, CAB members who represent the community and community outreach workers who are responsible for implementing community engagement activities. I reflect on how, in the research setting, community engagement continues to be reduced to the performance of a limited set of activities focussed on achieving operational and ethical objectives and recruiting large numbers of community members into HIV vaccine research studies.
“…not just dogs, but rabid dogs”: The effect of volunteer roles and recruitment targets on trust and distrust within communities
Mackwellings Phiri [1], Rodrick Sambakunsi [1], Kate Gooding [1,2], Nicola Desmond [1,2]
1. Malawi Liverpool Wellcome Trust Clinical Research Programme
2. Liverpool School of Tropical Medicine
Background
Community involvement in research is designed to enhance relationships between researchers and communities and support ethical practice. However, community volunteers may encounter tensions related to their research responsibilities. The study explored how community members engaged by research studies as both key informants and community representatives face potentially conflicting roles.
It examined an integrated community liaison system and community engagement strategy established within a large community-based HIV/TB intervention to enhance dialogue between the community and research team.
Methods
The study was conducted in urban Blantyre, in Southern Malawi. Data collection employed qualitative research methods combining a workshop with research volunteers, in-depth interviews and focus group discussions. Purposive sampling was used for recruitment of study participants. Thematic analysis was used, and data was coded using an inductive approach based on identifying emerging themes.
Findings
The engagement strategy created tensions within the community and impacted on trust between the community volunteers and the research team. Combined with difficult recruitment targets, power relationships between researchers and community volunteers affected the way community representatives understood and performed their roles. Their duties as community representatives created tensions between different kinds of representatives and community members, and this affected long-term social relationships within the community.
Conclusion
The findings show how roles assigned to research volunteers and challenging recruitment targets can negatively shape social life within communities by damaging relationships.
Barriers to Community Engagement in a Small Hospital Based Research unit in Patan, in the Kathmandu Valley
Siân Aggett [1,2]
1. Wellcome Trust Doctoral Researcher
2. Sussex University, Department of Global Studies
Abstract
Engagement terminology rhetoric seems to have recently appropriated the work ‘creative’, perhaps as a way to distinguish engagement based on simple communications models from something which is less predetermined in outcome, open to being transformed by context and less constrained by assumptions of simple linear routes to change. However, how might such projects interface with the daily work of a resource poor, hospital based research environment in a country where the arts are not taught in the curriculum and creativity is not a quality nurtured in the local education system?
I propose to present a paper on two projects: - ‘Sacred Water’ and ‘Jeewan Jal’, which have attempted to use participatory community based arts approaches as a tool to address engagement needs between researchers at the Oxford University Clinical Research Unit-Nepal and people within their research area. Both projects centre around water, health and community: linked with the research unit’s work on enteric disease. ‘Sacred Water’, funded through a Wellcome Trust International Engagement Award found it very difficult to meet overarching objectives of ‘mutual understanding’, dissemination of research findings, informing research protocol and the inclusion of biomedical research knowledge into the creative processes. ‘Jeewan Jal’ is building on the lessons learnt through the experiences of ‘Sacred Water’, and is exploring the types of spaces and interactions where exchange between researchers and non-researchers might take place and what kinds of knowledges might be accommodated and created under the guise of collaborative arts. Both projects have highlighted structural and institutional barriers which, will be tentatively presented in this paper with the hope of gaining critical input from conference attendees.
Who is answerable to who? Exploring the complex relationship between researchers, the community and community representative organisations in two clinical trials in Zambia
Musonda Simwinga [1,2], John Porter [1,2] and Virginia Bond [1,2]
1. Zambia AIDS Related Tuberculosis Project (ZAMBART)
2. London School of Hygiene and Tropical Medicine (LSHTM)
Abstract
Research is often initiated by researchers as powerful outsiders with skill, knowledge and funds. However, to be successful and ethical, research requires the active participation of people as individuals and collectives. Therefore, it has become a standard requirement for studies to engage in relationship building activities with different community groups to secure entry into the community; solicit input at different stages of the research; and to ensure ongoing dialogue. The extent to which community representatives effectively play their role depends on a number of factors including the nature of communication and power relations between themselves and researchers, and the ability to demand and enforce answerability from each other and in particular from researchers. This paper will explore the accountability relationships that arose between researchers, the community and community representative structures (namely Community Advisory Boards (CABs)), drawing on research carried out in two clinical trials in Zambia between 2010 and 2014.
Challenges of Interdisciplinary Collaboration in Community Engagement: Reflections from a Street Theatre Project at a TB Vaccine Trial Site in South Africa
Justin Dixon [1], Amber Abrams [2]
1. Durham University, UK
2. University of Kent
Abstract
This paper explores a community engagement project run by the South African Tuberculosis Vaccines Initiative (SATVI), which has been running TB vaccine trials in the Breede Valley, Western Cape since 2001. The project, called ‘Carina’s Choice’ (CC), began its life in 2009 as a comic-cum recruitment tool for a large infant vaccine trial, and was about a young Afrikaans woman’s ‘brave choice’ to enrol her baby in the trial. Subsequently, in anticipation of an adolescent trial, CC was adapted into a play and performed by local adolescents in high schools across the Breede Valley. Both comic and play were designed primarily to convey information, which could be measured and deemed a ‘success’ using pre- and post-intervention knowledge tests. CC’s latest incarnation, however, sought to do something different. Involving clinical scientists, actors, applied and academic anthropologists, it entailed a street theatre production which was explicitly funded to do ‘public engagement with science’.
But how democratic is the stage? We focus upon the diverging ways in which ‘public engagement with science’ was interpreted by the collaborators. The anthropologists saw it as an opportunity to discover and dramatize alternative versions of the ‘SATVI story’ to the rights/autonomy-centred one performed in schools. SATVI’s clinical scientists, by contrast, drew a distinction between ‘science’ (e.g. TB, vaccinology, participant rights) and ‘SATVI’ (the particular institute with whom people had considerable experience), favouring an abstract engagement with the former rather than opening up the stage to potentially damaging perceptions of SATVI and its trials. Moreover, conscious that the sponsor wanted to see its money had been well-spent, they continued to think of the street theatre performance as an ‘intervention’ whose effectiveness was to be measured. The result was a hybrid of both worlds: pre-‘intervention’ focus groups, fed into an open-ended play where the audience could choose the direction, and finally post-‘intervention’ focus groups intended to foster discussion and debate. Overall, we feel that this was valuable and productive with many lessons learned. However, the anthropologists especially were left with the feeling that the ‘need’ for demonstrable outcomes overly abstracted ‘public engagement’ from context, constrained community input and detracted from the critical potentials of the project.
What counts as community engagement in health research? views on the purpose of community engagement among stakeholders in Malawi
Deborah Nyirenda [1,2,3], Kate Gooding [1,3], Bertie Squire [3], Chiwoza Bandawe [2], Salla Sariola [4], Nicola Desmond [1,3]
1. Malawi Liverpool Wellcome Trust,
2. University of Malawi-College of Medicine,
3. Liverpool School of Tropical Medicine,
4. University of Oxford, Nuffield Department of Population Health
Background
Community engagement is increasingly promoted in international research guidelines to improve dialogue between researchers and communities in designing and implementation of research. There is however no widely agreed definition of community engagement leading to various interpretations: as a means of informing, consulting or actively involving communities in research. Limited evidence exists on effective approaches of engaging communities in two way dialogue particularly in settings with low health literacy. Our research seeks to examine views of various stakeholders on community engagement and factors that shape the engagement process.
Methods
This paper draws from a wider study investigating the purpose, relevance and benefits of community engagement in health research using a qualitative research design. Three research projects were purposively selected as ethnographic case studies from two research institutions in Malawi. Participant observation was used to understand unarticulated aspects of community engagement in health research. In-depth interviews were used to understand community engagement as experienced by various stakeholders involved in research while focus group discussions were used to seek views of people on community engagement.
Preliminary results
Although community engagement is promoted in the literature to support two way dialogue between researchers and communities, findings suggest that it is seen by stakeholders as a means of informing communities about research. Community engagement practices observed reflected deficit models of engagement which have been critiqued because of the assumptions that the public is ignorant and they need to be informed. Views on the purpose of community engagement however vary across stakeholders involved in research. We noted that community engagement practices were shaped by interactions between multiple stakeholders involved in research, their diverse agendas for engagement, communication approaches, interactions with other service providers in a given context, and other socio cultural factors. Despite having an aim of informing, a majority of research participants still had challenges to understand health research.
Conclusions
We conclude that stakeholders understand community engagement as a means of informing communities about research which does not match the ideals in the literature. This understanding is shaped by a number of social and economic factors. An understanding of these factors will help to design community engagement approaches that will promote meaningful dialogue in a particular context.
Engagement in Context: Practice, Research, Policy in Global and Public Health
Daniel Reeders [1]
1. ANU RegNet School of Regulation and Global Governance
Abstract
This paper aims to locate public or community engagement and health research in relation to (a) governance of population health and (b) practice in community-based health promotion. It argues we need to identify what engagement – in different forms and on different occasions – does for government. This need arises because engagement is compatible with so many key ideas in neoliberal governmentality – in particular, Hayek’s notion that local markets have detailed knowledge that central government can never develop, which underpinned Thatcherite policies of devolution of planning to local communities. We can use Mitchell Dean’s theorisation of social governance to ask whether communities get ‘captured’ via engagement in the management of population health issues – which, as Foucault reminds us, includes knowledge practices like epidemiology, criminology, social psychology, etc. This poses important ethical questions: with Nancy Fraser, we might ask whether and how different modes of incorporating engagement in global health research ‘affirm’ or work to ‘transform’ the underlying generative framework of social inequities in health. Reflecting critically on my experience as a practitioner and researcher in Australia’s community-based response to HIV, I want to think through how practices of engagement in research might help to constitute publics that can bring weight to bear on political debate and policy-making processes – a missing ingredient in the discourse on the social determinants of health equity.
Partnering with Faith Communities to Address HIV Disparities in Urban America
Magdalena Szaflarski [1]
1. University of Alabama at Birmingham, USA
Abstract
African Americans face the most severe burden of HIV among all racial/ethnic groups in the United States, accounting for half of new infections and all infections at all stages of disease. The racial disparities in HIV and the long time that it has taken for evidence to translate into practice have created a national urgency to design effective interventions that can be scaled up rapidly. Faith communities, especially black churches, have been suggested as a key partner to address HIV, but stigma and condemnation of homo-/bi-sexuality contribute to discrimination against people who are infected or perceived at risk and impede HIV prevention efforts. This paper will describe a community-engaged research program to address HIV disparities in urban America that involves faith communities in two urban locations -- Cincinnati, Ohio and Birmingham, Alabama. The overarching goal of this community-partnered program is to implement an effective HIV stigma reduction, prevention, and care strategy for African Americans through empowering and engaging local faith communities. The specific aims of this research are: 1) To develop broad and sustainable academic-community coalitions to address HIV stigma and HIV prevention/care efforts, with a particular focus on faith communities; 2) To identify congregations in African American and other at-risk neighborhoods that are most suitable to provide needed HIV programs, using predictive multilevel modeling; and 3) To design and test a faith-community guided intervention to reduce HIV stigma and improve HIV education/prevention efforts in high-risk communities. This research is guided by the US federal community-engaged research guidelines and global HIV stigma conceptual frameworks. We have employed concept mapping and health impact assessment methods to conduct community HIV needs/resources assessments and to evaluate each city project. Our study’s significant innovation is a focus on religion and HIV and the use of CBPR with a rigorous evaluation component. Furthermore, a predictive model of congregation’s responses to HIV will guide and complement the CBPR. The study provides new evidence about strategies to enhance HIV prevention/care through community engagement and mobilization and reduce the HIV disparity in African Americans.