The conditions that characterize marginal and informal settlements in the Global South make the environmental hazards resulting from the current Climate Crisis more dangerous, giving rise to multifaceted risks that can be characterized as Anthropocene harmscapes. As such settlements are home to a large and growing population, this is an increasingly widespread problem that, if not addressed, could result in deaths, unrest and increasing numbers of climate refugees. Recognizing that neither climate change nor informality are going to disappear, it is essential to find practicable, contextualized and locally appropriate ways of mitigating and coping with climate change-exacerbated risks such as water scarcity, floods and fires. This paper describes a co-research process intended to enable residents of at-risk settlements to mobilize their own knowledges and experiences to identify and articulate strategies with a realistic potential for practical implementation. It demonstrates how this process yielded suggestions for actions that operate at a range of scales, from small changes to everyday practices that can be accomplished by individuals and households to infrastructural improvements that need cooperation and resourcing from local or national authorities. It also demonstrates some of the limitations of decolonial approaches that uniquely prioritize local knowledges when attempting to address challenges with global origins.
Understanding climate-related challenges and generating effective interventions against them often lacks the knowledge of those who directly experience those challenges as a lived reality. We use the ‘Water and Fire’ project as an example of a research process undertaken to mobilize community knowledge on environmental disaster risk management. We worked with site-specific groups of community-based co-researchers who live in three marginalized areas of Cape Town that are susceptible to fire outbreaks, flooding, and water scarcity. We took a layered participatory visual methods approach, including digital storytelling, community mapping and photovoice, to differentially demonstrate how these hazards are experienced at household, neighbourhood, and community levels from the perspective of community-based co-researchers. The on-going enquiry enabled the co-researchers to illustrate and describe the biggest challenges they face and propose what they see as the most practical and promising solutions. We then facilitated a process of participatory analysis, triangulation of data and democratic decision-making amongst the co-researchers, through which they formulated a series of community-derived ‘Best Bets’ to better manage disaster risks. As part of the analysis, the co-researchers selected the stories, maps and photographs they wanted to present at stakeholder engagement events in making a case for the relevance and urgency of their Best Bets. We conclude that the participatory visual methods approach taken in the ‘Water and Fire’ project can be used as a model to strengthen the mobilization of local knowledge and further possibilities for community-derived disaster risk management in the context of advancing climate change.
This article explores the pedagogical affect of water in a place of water stress and illustrates its entanglement with dynamics of power and control. The current climate crisis is rendering already drought-prone regions ever drier, and it is often the already socially and economically disadvantaged who experience the most immediate impacts. In this article, we describe the experiences of residents in one township in South Africa’s Cape Flats to explore how water literacies have developed and been reinforced by a prolonged period of water scarcity. By analysing assemblages of images and accompanying texts produced through a PhotoVoice process undertaken by co-researchers in this settlement, we show how water’s presence as an always imminent absence has profound pedagogical impact. We also explore how water manages to escape and flow outside of attempts to control and constrain it. Finally, we speculate on the implications for place-based water literacies and the pedagogies at work in other places of water stress.
Water justice-equitable, reliable access to clean, sufficient water, and the knowledge and mechanisms related to its management-is a key global social justice and environmental issue. Cape Town, South Africa, is an important context to explore water justice due to its 2018 water crisis. Water scarcity intersects with other issues, including health disparities, food insecurity, and gender inequity, in turn requiring citizen engagement in water-related issues and knowledge sharing to produce sustainable, contextually relevant solutions. The arts are powerful tools for citizen engagement and knowledge sharing and translation in research, as well as social and environmental action. In this Resources, Frameworks, and Perspectives article, we outline the methods and lessons learned from developing Confluency, an arts-based exhibit and resource that aimed to generate and share knowledge on water justice issues between academics, practitioners, artists, and activists in Canada and South Africa. We detail the methods used to develop the Confluency exhibit and resource, including preparing the art exhibit framework, facilitating art workshops, designing interactive stations, and implementing the interactive art exhibit. Lessons learned are shared from implementing Confluency in diverse South African and Canadian settings. These case studies signal that the methodological approaches used in designing and implementing this exhibit and resource hold promise for providing opportunities to reflect on, and learn about, global and local water justice issues. This resource could be expanded to engage communities in research, policy, and practices regarding water justice in other diverse global settings to advance health, equity, and rights.
Advancing climate change is an urgent global driver of human disease with some of the world’s most marginalized communities being at highest risk. In response to this compound threat, scientific studies exploring the intersections of climate and health are gaining momentum, yet sparse attention is currently paid to models of research that engage and involve those who are most affected. This is a crucial moment for the global health field to take up valuable lessons from the relatively few climate-health studies that have purposefully brought scientists together with communities and members of the wider public, via established approaches such as community-based participatory research and citizen science, to reduce health risks and better understand the deeper determinants of disease. Through a scoping literature review of PubMed and qualitative framework analysis, we investigate scientific, ethical, and social justice rationales that have motivated scientists to involve communities, including Indigenous groups, and other public stakeholders in climate-driven health research to varying degrees in different global contexts. We also examine the benefits of diverse forms of engagement and show that involving communities in research at the climate-health nexus has, for example, generated co-produced adaptation strategies that respond appropriately and effectively to priority health hazards. In addition, our findings demonstrate limitations, challenges, and ethical considerations that can arise when engaging communities in climate-health research. We argue that ethically engaging and involving communities and the wider public in research at the intersection of climate change and health is imperative for identifying relevant research priorities, promoting responsiveness that can appropriately fill gaps in at-risk settings, and advancing social justice. Our paper offers a range of examples of research designs and activities to guide scientists working in this emerging interdisciplinary field, inform funders seeking to support innovative and potentially transformative research, and contribute to global health policy.
Background: The article analyses the policy engagement component of a research project on climate resilience in vulnerable communities that took place in Cape Town, South Africa. Conducted in 2022, the engagement included community and stakeholder events in three research sites, and a cross-cutting policy event with municipal officials, held at the end of the project. Importantly, this policy engagement process occurred in a context of political marginalisation, that is, one characterised by low trust, and little meaningful representation or even communication between these vulnerable communities and the city. Aims and objectives: This article examines the impact of policy engagement on political relations between local government and vulnerable communities. Methods: The overall methodology of the article is qualitative, using an illustrative case-study research design to unpack the subjective experiences of both government officials and residents of vulnerable communities. Primary data included many primary documents, direct observation of the engagements and post-event interviews. Findings: First, the engagement process created new ‘invented’ spaces for the representation of community perspectives to the city, and the city’s perspective to the community. Second, the engagement facilitated community self-representation through educating community members to advocate for their ideas in these new invented spaces. Third, this engagement tended to be more constructive and deliberative than polarising and confrontational. Discussion and conclusions: Drawing on the theoretical framework of ‘political mediation’, the policy engagement process is characterised as a positive instance of democratic mediation through ‘empowered representation’, with some specified limitations.
This article explores how place-based learning and the development of landscape literacies unfold in a place suffused with a complex set of risks resulting from inter-operating and intersecting sociohistorical, political and environmental factors. By analysing assemblages of images and accompanying texts produced through a photovoice process undertaken by co-researchers in an informal settlement in South Africa's Cape Flats, we show that residents are embedded in an ongoing process of embodied place-connectedness that has extensive pedagogical impact. We suggest that the learning that takes place in this harmscape may enable residents' survival at the cost of allowing for either hope or the possibility of transformative change.
A significant percentage of the urban population in most low- and middle-income countries live in informal settlements. Due to poor quality housing, dense settlement patterns and lack of risk reducing infrastructure, informal settlements are least prepared and at higher risk for climate change issues. Marginalized communities in settlements in the Cape Flats region of South Africa face a range of environmental hazards and risks including recurrent large-scale fires, localised flooding and inconsistent access to water. This paper presents findings from a household survey with 600 participants from three economically marginalized settlements in this region. The paper explores how different forms of capital come into play in the shaping of these experiences and responses and uses these to consider power structures and the creation of particular types of habitus amongst settlement residents. Results show that cultural (knowledge) capital is one of the most important capitals enabling resilience and adaptive capacities across all three sites. Findings show the complex interplay of forms of capital and the importance of recognizing ownership, control and power structures. Our findings also illustrate how repeated exposure to risk can shape a habitus of risk acceptance and a focus on coping rather than change. Insights from this study further enhance knowledge of community resilience that could potentially inform policy development and institutional disaster risk reduction strategies for climate change resilience of cities in low- and middle-income countries.
Background: Post-positivist critics of the linear-rational understanding of the role of knowledge in decision making have long argued the need for the construction of socially robust knowledge to illuminate policy problems from a variety of perspectives, including lived experiences. Aims and objectives: This article charts the attempts of researchers to employ a creative method, digital storytelling, alongside more traditional scientific data in stakeholder deliberations to inform local food governance in South Africa. Methods: Four storytellers from a marginalised group created and introduced their digital story about a 'time when they had to make a difficult choice about what food to purchase or get' to a public governance forum and the reactions of the audience self-reported. Findings: The digital stories were emotionally compelling and gave granular detail to the more top-down perspective of the scientific data. There were concerns, however, for the welfare of the storytellers when introducing their stories in the forum. Discussion and conclusion: Our findings highlight the multi-functionality of digital storytelling as a method of creativity within the process of co-production, not just as a technique to make visible knowledge from marginalised groups, but also as a mechanism (when used and viewed in a wider governance context) to promote knowledge mobilisation and alternative ways of knowing. The use of digital storytelling in these wider governance contexts, or social learning spaces, however, also surfaces ethical and other risks.
Aligned to the Sendai framework, the UKRI GCRF Water and Fire research project aims to co-produce knowledge with residents of three vulnerable communities in the Cape Flats area of Cape Town to generate adaptive solutions that strengthen resilience against the environmental disasters of drought, flooding and fire outbreaks. To achieve this aim, the research team employed household surveys and participatory visual methods including digital storytelling (DST), community mapping and photovoice with residents of three affected communities. This paper focuses on validating the DST method used in the 'Water and Fire' project and interrogates how well the DST process conforms to six types of validity, namely, participatory, intersubjectivity, catalytic, contextual, ethical and empathic validity as guided by the International Collaboration for Participatory Health Research (ICPHR). Twenty-five digital stories on the overarching theme of resilience were produced by 25 Cape Flats residents. We suggest that participatory validity was achieved through participants making decisions about the stories and details they wanted to share. Intersubjective validity was fostered by involving community advisory members in DST process design, through co-conceptualizing resilience with participants and by evaluating the DST experience. Catalytic validity was achieved when participants screened their digital stories in shared learning spaces to convey how they respond to and live with disasters at numerous community and policy engagement events. Contextual validity was met by exploring relevant environmental disasters affecting the Cape Flats communities. Ethical validity was attained by creating safe and supportive spaces, enabling dynamic informed consent and transferring ownership of the digital stories to the story tellers. Connecting participants through collective sharing of individual disaster experiences, lessons-learned and adaptive strategies fostered empathy. We recommend complementing DST methods with other research methods like surveys, and focus group discussions, while evaluating the transformative potential of the DST process and stakeholder engagement events, to enable better catalytic validity. We advocate for collaborative and inclusive approaches with vulnerable communities alongside stakeholders and statutory bodies in multi-stakeholder engagement events. We conclude that digital stories are an effective and valid conduit for knowledge co-production with vulnerable communities in the context of climate change resilience as these methods create opportunities for affected communities to raise their concerns and share their experiences.
Community engagement and involvement have been increasingly recognized as an ethical and valuable component of health science research over the past two decades. Progress has been accompanied by emerging standards that emphasize participation, two-way communication, inclusion, empowerment, and ownership. Although these are important and noble benchmarks, they can represent a challenge for research conducted in marginalized contexts. This community case study reports on the methods, outcomes, constraints and learning from an NGO-led community engagement project called Bucket Loads of Health, implemented in the Western Cape province of South Africa. The independent project team used multiple participatory visual methods to foster two-way communication between members of two disenfranchised communities, Enkanini and Delft, and a group of water microbiologists at Stellenbosch University who were conducting research in Enkanini. The project was carried out during the 2018 Western Cape water crisis, under the growing threat of “Day Zero”. The resulting visual outputs illustrated the negative impacts of water shortage on health and wellbeing in these community settings and showcased scientific endeavors seeking to address them. Engagement included knowledge exchange combining body maps, role play performances and films created by the community members, with hand maps, posters and presentations produced by the scientists. Whereas these engagement tools enabled reciprocal listening between all groups, their ability to respond to the issues raised was hindered by constraints in resources and capacity beyond their control. An additional core objective of the project was to bring the impacts of water shortage in participating communities, and the work of the research team, to the attention of local government. The case study demonstrates the challenges that politically ambitious community engagement faces in being acknowledged by government representatives. We further the argument that research institutions and funders need to match professed commitments to engagement with training and resources to support researchers and community members in responding to the needs and aspirations surfaced through engagement processes. We introduce the concept of engagement integrity to capture the gap between recommended standards of community engagement and what is realistically achievable in projects that are constrained by funding, time, and political interest.
Knowledge about what builds and what blocks pathways to accountability in South African townships could be strengthened by better understanding the role of intersectionality in these settings. This article describes our use of a novel hand mapping method to explore identity and inequality among a collective of community members from the township of Delft in Cape Town. We share new insights about the effect of intersecting inequalities on the capacity of activists and concerned young citizens to take part in building accountability for safer spaces in South Africa. Although we gained a deeper understanding about some of the ways that intersecting inequalities play out in the lives of Delft residents, we also learnt lessons about the limits to facilitated accountability struggles. Some of these struggles relate directly to the inequalities that this study has highlighted, and some reflect the highly fluid socioeconomic and political environment in which our work was situated. This article is divided into eight main sections. We begin by introducing the theory of intersectionality and provide a rationale for using participatory visual methods as tools for intersectionality research. We then summarize the study context and describe the hand mapping method that was used. The following four sections present our results through discussions of identity and personal experiences of inequality, unpacking intersecting inequalities, the possibilities and constraints of advancing accountability, and balancing accountability with the conditions of collective action. The paper ends with a summary of the insights and conclusions we have reached through facilitating this action research process.
There remains a pressing need for biomarkers that can predict who will progress to active tuberculosis (TB) after exposure to Mycobacterium tuberculosis (MTB) bacterium. By analyzing cohorts of household contacts of TB index cases (HHCs) and a stringent non-human primate (NHP) challenge model, we evaluated whether integration of blood transcriptional profiling with serum metabolomic profiling can provide new understanding of disease processes and enable improved prediction of TB progression. Compared to either alone, the combined application of pre-existing transcriptome- and metabolome-based signatures more accurately predicted TB progression in the HHC cohorts and more accurately predicted disease severity in the NHPs. Pathway and data-driven correlation analyses of the integrated transcriptional and metabolomic datasets further identified novel immunometabolomic signatures significantly associated with TB progression in HHCs and NHPs, implicating cortisol, tryptophan, glutathione, and tRNA acylation networks. These results demonstrate the power of multi-omics analysis to provide new insights into complex disease processes.
Background: We evaluated the role that selected variants in serotonin transporter (5-HTT), dopamine receptor 2 (DRD2) and brain-derived neurotrophic factor (BDNF) genes play in PTSD symptom severity in an at-risk population. We also investigated the interaction between the genetic variants to determine whether these variables and the interactions between the variables influenced the severity of PTSD symptoms. Methods: PTSD symptoms were quantitatively assessed using the Davidson Trauma Scale (DTS) in 150 participants from an at-risk South African population. All participants were genotyped for the 5-HTTLPR, DRD2 Taq1A and BDNF Val66Met polymorphisms. Gene– gene interactions were investigated using various linear models. All analyses were adjusted for age, gender, major depressive disorder diagnosis, level of resilience, level of social support and alcohol dependence. Results: A significant interaction effect between DRD2 Taq1A and BDNF Val66Met variants on DTS score was observed. On the background of the BDNF Val66Val genotype, DTS score increased significantly with the addition of a DRD2 Taq1A A1 allele. However, on the BDNF Met66 allele background, the addition of an A1 allele was found to reduce total DTS score. Conclusions: This study provides preliminary evidence for an epistatic interaction between BDNF Val66Met and DRD2 Taq1A polymorphisms on the severity of PTSD symptoms, where both too little and too much dopamine can result in increased PTSD symptom severity.
Obtaining consent for HIV research is complex, particularly in low- and middle-income countries. Low levels of education, complexity of science and research processes, confusion about basic elements of research, and socio-economic conditions that make access to medical care difficult have collectively led to concerns about the adequacy of the consent process. Given the exponential growth of HIV prevention and treatment research in South Africa, HIV researchers are increasingly facing challenges obtaining authentic informed consent from potential participants. It is anticipated that HIV cure research, despite being in its infancy in South Africa, will introduce a new discourse into a population that is often struggling to understand the differences between ‘cure’, ‘preventive and therapeutic vaccines’ and other elements of the research process. Coupled with this, South Africa has a complex history of ‘illegitimate’ or ‘false cures’ for HIV. It is therefore logical to anticipate that HIV cure research may face significant challenges during consent processes. HIV prevention research in South Africa has demonstrated the importance of early community engagement in educating potential research participants and promoting community acceptance of research. Consequently, in an attempt to extrapolate from this experience of engaging with communities early regarding cure research, a 15-minute educational video entitled ‘I have a dream: a world without HIV’ was developed to educate and ultimately empower potential research participants to make informed choices during consent processes in future HIV cure clinical trials. To aid others in the development of educational interventions, this paper discusses the challenges faced in developing this educational video.
There is a growing body of literature describing conceptual frameworks for working with participatory visual methods (PVM). Through a global health lens, this paper examines some key themes within these frameworks. We reflect on our experiences of working with with an array of PVM to engage community members in Vietnam, Kenya, the Philippines and South Africa in biomedical research and public health. The participants that we have engaged in these processes live in under-resourced areas with high prevalence of communicable and non-communicable diseases. Our paper describes some of the challenges that we have encountered while using PVM to foster knowledge exchange, build relationships and facilitate change among individuals and families, community members, health workers, biomedical scientists and researchers. We consider multiple ethical situations that have arisen through our work and discuss the ways in which we have navigated and negotiated them. We offer our reflections and learning from facilitating these processes and in doing so we add novel contributions to ethical framework concepts.
BACKGROUNDHuman immunodeficiency virus (HIV) exposed infants are at high risk of Mycobacterium tuberculosis exposure, have high rates of progression to tuberculosis (TB) disease and are at significant risk of bacille Calmette-Guérin (BCG) induced adverse events.OBJECTIVETo evaluate a delayed BCG vaccination strategy in HIV-exposed infants.DESIGNA randomised trial of routine BCG vaccination given at birth compared to 14 weeks of age in HIV-exposed non-infected and non-HIV-exposed infants to investigate longitudinal BCG-induced immune responses using a 7-day whole blood interferon-gamma (IFN-γ) enzyme-linked immunosorbent assay.RESULTSA significantly higher proportion of infants had positive responses to M. tuberculosis purified protein derivative (PPD) and BCG at 14 weeks in the birth vs. delayed vaccination groups (P = 0.001 for both). This difference was no longer apparent at weeks 24 or 52. Among infants vaccinated at birth, the 14-week IFN-γ response to M. tuberculosis PPD was lower among HIV-exposed than non-exposed infants (276.5 pg/ml vs. 790.2, P = 0.048). Among all infants, there were significant correlations between the magnitude of IFN-γ responses to BCG, M. tuberculosis PPD, TB 10.4 and culture filtrate protein 10/early secreted antigenic target 6.CONCLUSIONSThe timing of vaccination had limited effect on BCG-induced IFN-γ responses, which waned considerably over 1 year despite initial vigorous responses in both vaccination groups. The lower responses in HIV-exposed non-infected infants suggest potentially altered mycobacterial immunity early in life.