Session one from the 2016 Ethics and Politics of Community Engagement in Global Health Research Workshop explored what makes engagement effective through four paper presentations. The abstracts of the four papers, alongside author information and further information, are listed below.

Community engagement for Targeted Malaria Elimination in Nong District, Savannakhet Province, Lao PDR: design, implementation and critical reflection

Bipin Adhikari [1], Christopher Pell [6], Koukeo Phommasone [2], Tiengkham Pongvongsa [3] Gisela Henriques [2], Paul Newton [2,4] Nicholas White [1,4], Lorenz von Seidlein [1,4], Arjen Dondorp [1,4], Nick Day [1,4], Mayfong Mayxay [2.4,5], Phaik Yeong Cheah [1,4] 

1. Mahidol-Oxford Tropical Medicine Research Unit, Faculty of Tropical Medicine, Mahidol University, Bangkok, Thailand
2. Lao-Oxford-Mahosot Hospital-Wellcome Trust Research Unit (LOMWRU), Microbiology Laboratory, Vientiane, Lao PDR
3. Savannakhet Provincial Health Department, Savannakhet Province, Lao PDR
4. Centre for Tropical Medicine and Global Health, Nuffield Department of Medicine, Churchill Hospital, Oxford, UK
5. Faculty of Postgraduate Studies, University of Health Sciences, Vientiane, Lao PDR
6. Centre for Social Science and Global Health, University of Amsterdam, Amsterdam, The Netherlands

Introduction

Targeted Malaria Elimination (TME) involves a package of malaria prevention and control strategies, including the mass administration of antimalarials to entire communities. In light of concerns about increasing antimalarial resistance, TME is currently being evaluated across South East Asia. The effectiveness of mass drug administrations (MDAs) depends on high population coverage and adherence, and community engagement (CE) is recognized as crucial to promote this. Almost ubiquitous among MDA programmes, the process of designing and conducting CE is however, often left unreported. In this paper, I discuss the design of the CE strategy and the impact of CE activities for TME in Nong district, Laos.

Methods

The design and implementation of CE activities took place from November 2015 until May 2016. The implementing research team (including the lead author) documented the process of designing the CE strategy and the CE activities as field notes, audio recordings, videos and photos.

Results

Designing the CE strategy started with the recruitment of two local social scientists. Drawing on the advice of the provincial Head of Malaria, the CE strategy began with consulting the Nong district authorities. A meeting was organized at district health center where community leaders were introduced to the study. A district health officer, fluent in Laothung (a non-written language spoken in the study villages) acted as a study coordinator and aided the TME team in introducing the proposed CE activities to community leaders. In each study village, volunteers were recruited and involved in implementing the CE activities, which included health education (leaflets, malaria guide book on TME, posters, power point presentation, drawing exercise, focused group trainings and mass meetings), audio-visual shows (a malaria documentary from provincial malaria control division and two videos made by the TME team), health care (from TME medics and the TME-funded health center), incentives (mosquito nets, kitchen materials, TME T-shirts, sweets & milk and travel allowance) and house-to-house visits (a meeting night before the MDA and house to house visits in the evening and in the morning just before MDA)

Conclusion

Community engagement within TME was largely aimed at promoting coverage of and adherence to the MDA in the target villages. Preliminary results suggest that in those terms, it was a success. Nonetheless, particularly during the initial consent process, the TME team encountered rumours related to the blood sampling. Such stories seemingly had an impact on the levels of participation and, in response, CE activities (meetings with villagers and village heads, and house-to-house visits) were intensified and subsequently participation increased.

Reflections on the ethics of using participatory visual methods to engage communities in global health research

Gill Black [1], Alun Davies [2], Dalia Iskander [3], Mary Chambers [4]

1. Sustainable Livelihoods Foundation, Wynberg, Cape Town, South Africa
2. Kenya Medical Research Institute, Kilifi, Kenya
3. London School of Hygiene and Tropical Medicine, London, United Kingdom
4. Oxford University Clinical Research Unit, Ho Chi Minh City, Vietnam

Abstract

This paper reflects upon the extensive experiences of practitioners who have been working with participatory visual methods in four very different contexts to engage community members in public health and biomedical research processes. Over the past five years, we have explored an array of interactive engagement approaches including drama, photovoice, digital storytelling, video diaries and participatory video in Vietnam, Kenya, the Philippines and South Africa - and have worked with young children, adolescents and adults across these settings. The participants that we have engaged in these initiatives all live in under-resourced areas with high prevalence of communicable and non-communicable diseases. Our paper describes the challenges, successes and learning we have encountered in using participatory methods to build relationships, foster knowledge exchange and facilitate change between community and family members, health workers and biomedical scientists. We draw upon multiple and diverse ethical situations that have emerged through facilitating community-led processes and share our observations on the ways in which they can enable inclusion or be unintentionally exclusionary. Many questions have arisen while we have been navigating these ethical landscapes; we explore the multiple purposes of producing participatory visual media, and look at how decisions are made regarding their dissemination and viewing. We consider intersecting matters of confidentiality, anonymity and vulnerability, the process of informed consent, decisions around content and editing, and discuss the sustainability of working with visual participatory methods for CE in biomedicine.

Involving communities in “Global mental health” research: The case for participatory action methods and community mental health competencies

Rochelle Burgess [1]

1. Centre for Primary Health and Social Care, London Metropolitan University

Abstract

Within the field of global mental health, and global health more broadly, there is a legacy stressing the involvement of ‘the community’ in processes of research and delivery of interventions. However, the invocation of this term is complex, as intersecting notions of power, action and participation are seen within the varied designs of ‘community research’, carrying direct implications for how communities are seen, engaged with and, affected by research. Using the movement of global mental health as a case study, this paper interrogates the notion of ‘community’ involvement in research, and argues for an approach that places community driven action at the heart of its efforts.

Community based approaches within global mental health position actors into two broad categories: volunteers or low-skilled staff who participate within research studies on short term basis, (‘handmaidens’ of research); or targets, individuals who participate in studies and trials. Both of these positions are often viewed largely in terms of their benefits. For example, increasing local skills via training, the introduction of employment opportunities into settings with limited other options, and the creation of pathways to treatment and care in areas where little to no services are available.

However, the limitations to these forms of engagement are also becoming increasingly well known. For example, the emotional labour linked to delivery of care in complex settings by low skilled staff or volunteerism can carry negative impacts for individual and community wellbeing. Beyond this, there are concerns linked to the ethics of non-sustainable treatment options created through short term research trials that may not always be supported or taken over by formal service sectors at the end of research activities.

The use of participatory action methods alongside the establishment of community mental health competencies (Burgess, 2012; Burgess 2014), may provide opportunities to shift research-related engagements in global mental health into more equitable partnerships with communities. Through a focus on developing psychosocial resources that enable communities to support their own health and wellbeing in the long term, community mental health competencies emphasise the types of participation that enable more active engagement in research, interventions, and wider community life. Participatory action research carries a similar emphasis on empowerment and community voice, and provides tools to overcome the devaluing of community potential that can arise from mainstream engagements with communities as discussed above.

It is hoped that through the application of such an approach, global health research with communities can revolve around the aim of establishing more meaningful and long term improvements as an outcome of global health research processes.

Using participatory community engagement approaches to address severe illness in children in urban and peri-urban communities in Blantyre, Malawi

Chimwemwe Phiri [1], Shariffa Abdullah [4], Thomasena O'Byrne [3], Bright Molande [4], Chris Kamlongera [4], Nicola Desmond [2] 

1. Malawi Liverpool Wellcome Trust Clinical Research Program
2. Liverpool School of Tropical Medicine
3. Meningitis Research Foundation
4. African Centre of Communication for Development

Caption: Theatre for Development in Blantyre by CPhiri is licensed under CC BY 4.0

Background

Community based engagement has the potential to enhance a community’s ability to address its health needs through improved treatment seeking. This paper explores the effectiveness of a collaborative community health intervention utilizing participatory theatre techniques to build relationships between research institutions and communities in turn empowering the communities involved. Community engagement that focuses on relationships between academic and community partners with principles of shared learning, collaboration, respect, mutual benefit and incorporates community knowledge is critical to achieving positive health outcomes in response to severe illness in children. We highlight the process of community engagement that took into consideration the social and political context of communities and the subsequent interaction of research institutions with various levels of community organization.

Methods

The theatre for development intervention was implemented in peri-urban and urban communities in Blantyre, Malawi. The intervention was conducted in three phases 1. Situation analysis and baseline assessments to understand knowledge and practices relating to severe illness in children 2. In collaboration with community members the development and implementation of theatre performances 3. A mixed methods evaluation approach to assess the impact of the approach in communities.

Results

An effective intervention was implemented that identified community contexts and incorporated community health needs. Individuals exposed to the intervention reported improvements in knowledge of severe illness in children and treatment seeking actions in response to a sick child. The intervention had notable empowering effects on community members involved in the play who implemented additional performances using their experience to share their knowledge in their communities.

Conclusion

A crucial lesson from this case study is the need to incorporate local knowledge and to consider social and political contexts identified by community members throughout the engagement process. The success of the project is attributed to the initial identification of key social and political stakeholders and use of culturally informed strategies that fed into the intervention.