Power and Powerlessness in a Group Based Digital Story Telling Project-An Exploration of Community Perceptions of Health Concerns in Urban Malawi.

Digital Story Telling (DST) is an art-based research method used to explore embodied experience of health and initiate dialogue with under-represented groups on issues affecting them. It involves engaging participants to create and share their stories using photos, drawings, and audio recordings in short videos. Benefits of DST include enhancing co-creation of knowledge, empowering participants to confront dominant narratives and revise inaccurate representations. We report our experiences and reflections of using DST to explore community perceptions of health concerns in urban Malawi. Community leaders were briefed about the project before and after study related activities. Three participatory workshops were organized to train community members in DST, support them to develop videos and discuss their experiences of DST. Twenty-six participants from two high density urban communities consented to be part of the workshops. They were all new to DST. All the 26 participants were invited together to the three workshops and their DSTs were developed in smaller groups (n = 7), based on their geographical location. Although we engaged residents from selected communities to share priority health concerns, all the seven groups presented challenges pertaining to Water, Sanitation and Hygiene (WASH), and their powerlessness to address the complex challenges. The collective focus on WASH showed that DST effectively empowered communities to present priority health concerns. The inability of community members to address the challenges without external assistance or failure to use findings from DST to generate social change however raise questions on the ideals of empowerment and social justice. In addition, lack of financial resources or technical know-how to produce digital stories and unequal power relationships between service providers and community, may affect the use of DST for community activism among socio-economically disadvantaged groups. We conclude that DST empowered participants to articulate genuine health challenges that they felt powerless to address. We question the realization of "empowerment" and social justice of vulnerable participants in cases where structural challenges present obstacles to effectively address social inequalities.

Engaging communities in non-communicable disease research and interventions in low- and middle-income countries: a realist review protocol.

INTRODUCTION: Engaging communities and intended beneficiaries at various stages of health research is a recommended practice. The contribution of community engagement to non-communicable disease research in low- and middle-income countries has not yet been extensively studied or synthesised. This protocol describes the steps towards generating an understanding of community engagement in the context of non-communicable disease research, prevention and health promotion using a realist review approach. A realist lens enables a rich explanatory approach to causation while capturing complexity, and an openness to multiple outcomes, including unintended consequences. The review will thus develop an understanding of community engagement without assuming that such practices result in more ethical research or effective interventions. METHODS AND ANALYSIS: We propose a realist approach aiming to examine how, why, under what circumstances and for whom community engagement works or does not work. The iterative review steps include clarifying the review scope; searching for evidence; appraising studies and extracting data; synthesising evidence and drawing conclusions; and disseminating, implementing and evaluating the findings. Principles of meta-narrative review (pragmatism, pluralism, historicity, contestation, reflexivity and peer review) are employed to ensure practicable and contextualised review outputs. The proposed review will draw on theoretical and empirical literature beyond specific diseases or settings, but with a focus on informing non-communicable disease research and interventions in low- and middle-income countries. The synthesis of existing literature will be complemented by qualitative realist interviews and stakeholder consultation. Through drawing on multiple types of evidence and input from both experts and intended beneficiaries, the review will provide critical and pragmatic insights for research and community engagement in low- and middle-income countries. ETHICS AND DISSEMINATION: Ethical approval has been obtained from the University of the Witwatersrand. Dissemination will include traditional academic channels, institutional communications, social media and discussions with a wide range of stakeholders.

Participant compensation in global health research: a case study.

BACKGROUND: Compensation for research participants can be provided for reasons including reimbursement of costs; compensation for time lost, discomfort or inconvenience; or expression of appreciation for participation. This compensation involves numerous ethical complexities, at times entailing competing risks. In the context of transnational research, often incorporating contexts of economic inequality, power differentials and post-colonialism, these issues extend into wider questions of ethical research conduct. METHODS: We describe experiences of conducting a community-based study of air pollution in southern Malawi incorporating ethnographic, participatory and air quality monitoring elements. Decisions surrounding participant compensation evolved in response to changing circumstances in the field. RESULTS: Attention to careful researcher-participant relationships and responsiveness to community perspectives allowed dynamic, contextualised decision-making around participant compensation. Despite widely cited risks, including but not restricted to undue influence of monetary compensation on participation, we learned that failure to adequately recognise and compensate participants has its own risks, notably the possibility of 'ethics dumping'. CONCLUSIONS: We recommend active engagement with research participants and communities with integration of contextual insights throughout, including participant compensation, as for all elements of research conduct. Equitable research relationships encompass four central values: fairness, care, honesty and respect.

Structural coercion in the context of community engagement in global health research conducted in a low resource setting in Africa.

BACKGROUND: While community engagement is increasingly promoted in global health research to improve ethical research practice, it can sometimes coerce participation and thereby compromise ethical research. This paper seeks to discuss some of the ethical issues arising from community engagement in a low resource setting. METHODS: A qualitative study design focusing on the engagement activities of three biomedical research projects as ethnographic case studies was used to gain in-depth understanding of community engagement as experienced by multiple stakeholders in Malawi. Data was collected through participant observation, 43 In-depth interviews and 17 focus group discussions with community leaders, research staff, community members and research participants. Thematic analysis was used to analyse and interpret the findings. RESULTS: The results showed that structural coercion arose due to an interplay of factors pertaining to social-economic context, study design and power relations among research stakeholders. The involvement of community leaders, government stakeholders, and power inequalities among research stakeholders affected some participants' ability to make autonomous decisions about research participation. These results have been presented under the themes of perception of research as development, research participants' motivation to access individual benefits, the power of vernacular translations to influence research participation, and coercive power of leaders. CONCLUSION: The study identified ethical issues in community engagement practices pertaining to structural coercion. We conclude that community engagement alone did not address underlying structural inequalities to ensure adequate protection of communities. These results raise important questions on how to balance between engaging communities to improve research participation and ensure that informed consent is voluntarily given.

'We are the eyes and ears of researchers and community': Understanding the role of community advisory groups in representing researchers and communities in Malawi.

Community engagement to protect and empower participating individuals and communities is an ethical requirement in research. There is however limited evidence on effectiveness or relevance of some of the approaches used to improve ethical practice. We conducted a study to understand the rationale, relevance and benefits of community engagement in health research. This paper draws from this wider study and focuses on factors that shaped Community Advisory Group (CAG) members' selection processes and functions in Malawi. A qualitative research design was used; two participatory workshops were conducted with CAG members to understand their roles in research. Workshop findings were triangulated with insights from ethnographic field notes, key informant interviews with stakeholders, focus group discussions with community members and document reviews. Data were coded manually and thematic content analysis was used to identify main issues. Results have shown that democratic selection of CAG members presented challenges in both urban and rural settings. We also noted that CAG members perceived their role as a form of employment which potentially led to ineffective representation of community interests. We conclude that democratic voting is not enough to ensure effective representation of community's interests of ethical relevance. CAG members' abilities to understand research ethics, identify potential harms to community and communicate feedback to researchers is critical to optimise engagement of lay community and avoid tokenistic engagement.

Recognising and treatment seeking for acute bacterial meningitis in adults and children in resource-poor settings: a qualitative study.

OBJECTIVE: High mortality burden from Acute Bacterial Meningitis (ABM) in resource-poor settings has been frequently blamed on delays in treatment seeking. We explored treatment-seeking pathways from household to primary health care and referral for ABM in Malawi. DESIGN: A cross-sectional qualitative study using narrative in-depth interviews, semi-structured interviews and focus group discussions. PARTICIPANTS: Adults and children with proven and probable acute bacterial meningitis and/or their carers; adults from urban and peri-urban communities; and primary health care workers (HCW). SETTING: Queen Elizabeth Central Hospital (QECH), urban and peri-urban private and government primary health centres and communities in Blantyre District, Malawi. RESULTS: Whilst communities associated meningitis with a stiff neck, in practice responses focused on ability to recognise severe illness. Misdiagnosis of meningitis as malaria was common. Subsequent action by families depended on the extent to which normal social life was disrupted by the illness and depended on the age and social position of the sufferer. Seizures and convulsions were considered severe symptoms but were often thought to be malaria. Presumptive malaria treatment at home often delayed formal treatment seeking. Further delays in treatment seeking were caused by economic barriers and perceptions of inefficient or inadequate primary health services. CONCLUSIONS: Given the difficulties in diagnosis of meningitis where malaria is common, any intervention for ABM at primary level must focus on recognising severe illness, and encouraging action at the household, community and primary health levels. Overcoming barriers to recognition and social constraints at community level require broad community-based strategies and may provide a route to addressing poor clinical outcomes.