Lurching from crisis to crisis: A reflection of ‘neglect’ and Ebola in Uganda

Lurching from crisis to crisis: A reflection of ‘neglect’ and Ebola in Uganda

Source: Flickr (UNMEER)

Written by: Sharifah Sekalala

On 21 December 2022, the president of the Republic of Uganda, Yoweri Kaguta Museveni, declared Uganda Ebola free, because it hadn’t reported a new case for 42 days – the criterion set by the World Health Organisation (WHO). Although the Ugandan Ebola crisis had, since 20 September, infected 142 people, 55 confirmed dead, including 8 school children and 7 health workers, the ‘end’ of the crisis didn’t even make many international headlines. It is true that these numbers are relatively small, but monkey pox which garnered huge global headlines killed only 22 people.

The paradox of perpetual crisis and neglect in global health

Uganda has faced five previous Ebola crises (2000-2001, 2007-2008, 2011, 2012-2013, 2018-2020). Patient zero for the 2022 crisis was a young man with the Sudan variant which had no known vaccine. Before 2016, when a mass outbreak in West Africa spread to many European countries, Ebola crises were primarily ignored by the international community. In the aftermath of the 2016 crisis, Joao Nunes used the term neglect to refer to diseases such as Ebola which are only recognised as a threat when they spread to life in the global north.

At the crux of this neglect is the way in which global health law recognises crises. In order to meet the WHO’s threshold for a Public Health Emergency of International Concern (PHEIC), a disease must cross borders. Therefore, countries like Uganda, which have managed to contain numerous public health crises within their borders, are often ignored.

Reaching the threshold of a PHEIC not only garners international attention but also allows developing countries to access funding, such as pandemic bonds. In the wake of the COVID-19 crisis, when the World Bank initially refused to pay, Bangin Brim and Clare Wenham accused the World Bank’s financing facility of being focused on paying out to investors over countries in need and creating a threshold in which the only realistic way in which poor countries can claim from this fund is if diseases spread across national borders.

Additionally, as Patricia Kingori has argued, the language of crises is framed within narratives with a singular beginning and end, which ignores the fact that some countries and communities remain in perpetual health crisis. This framing of crises that have a singular beginning and end neglects the experiences of huge parts of the world whose crises are becoming more frequent and more complex as zoonotic diseases spread from animals to humans, diseases mutate and spread faster due to globalisation but also due to increased environmental impacts from climate change in many parts of the world.

The crisis of care amidst depleted systems

The Ebola crisis in Uganda was also a crisis within broader social economic crises. The country was still struggling with the 2020 COVID-19 crisis, with only 13 million people out of 50 million people fully vaccinated, other infectious diseases, such as malaria, tuberculosis and HIV on the rise, and an economic crises caused by a prolonged period of lockdown.

Health workers were particularly affected with them forming 26 percent of infections. Yet again, the Ebola Crisis in Uganda resuscitated old debates about the adequacy of Personal Protective Equipment (PPE) for frontline workers. Frontline workers also accused the government of failing to pay them appropriately. 17 percent of all those infected were children which led to early school closures, with schools being closed two weeks early. This had a huge impact, as children in Uganda had already been subjected to the longest period of school closures in the world.

Countries that are perpetually in crisis rely on families for care, especially women. In Uganda, women are often the main caregivers in their homes, communities, and health facilities, which puts them at higher risk of illness. Rai et al. use the term ‘depletion’ to refer to the way in which the human energy needed for caring is hard to replenish. Low- and Middle-Income Countries like Uganda face depletion during crises, not only of frontline workers but also of women who continue to care when systems such as schools can no longer continue.

Vaccines and global neglect

Although Ebola was discovered more than 19 years ago, the vaccines that had been developed for the previous Ebola crisis were not effective on the Sudan Strain. The ways in which vaccines are researched, produced and distributed has come under increasing scrutiny, with rich countries being accused of vaccine colonialism, because although many countries took part in vaccine trials, once they were produced, rich countries hoarded vaccine doses, leaving many countries in the global south without access.

The proposed vaccine trials for the new Sudan variant highlights these global inequalities. Although the WHO lauded the fact that it took only 79 days to deliver trial vaccines, the vaccine trial which cost 9 million dollars has now been put on hold. As the prestigious journal Science had observed, ‘Uganda’s disappearing Ebola outbreak challenges vaccine testing.’ Because Uganda had done so well containing the Ebola outbreak, the waning number of cases made it difficult to create a ring trial, which is only effective if given to contacts of known cases.

The absence of a vaccine for the Sudan strain raises broader questions about the research and production of vaccines for diseases that are neglected. Although the trial included Ugandan scientists, the trial vaccines were produced in the global north, and the international community needed to raise US$9 million for a disease that has been endemic in Sub-Saharan Africa. This leaves the entire global community still vulnerable to a disease for which we may have had a cure if were not for neglect.

Author Bio

Sharifah Sekalala is a Professor of Global Health Law at the University of Warwick. Prof Sekalala is primarily interested in global health crises and the impact of law in curbing inequalities. Her research is focused primarily on Sub Saharan Africa and she is currently PI on a Wellcome-Trust-funded project on digital health apps in Sub-Saharan Africa. Prof Sekalala also serves as an Associate Fellow of Chatham House’s Global Health Program and the Chair of the Human Rights Working Group of the Global Health Law Consortium. This piece was made possible by funding from the Connaught Foundation Grant No: 512634 and Warwick Law School’s Impact Fund.

Mouzayian Khalil : 11 Jan 2023 09:17 |  Tags: Depletion Ebola Global Health Health Crisis Uganda |  Comments (0) |  Close comments |  Report a problem

Data–based humanitarianism in Nigeria and South Sudan

Source: Data and Displacement Project Fieldwork

Written by: Funke Fayehun, Briony Jones, Leben Moro and Vicki Squire

This blog from members of the Data and Displacement team explores barriers that emerge in the context of data-driven approaches to humanitarian protection.ⁱ

How far can a data-driven approach to humanitarian protection foster increased participation and improved outcomes for IDPs? We address this question based on an analysis of interviews with displaced persons (IDPs) and stakeholders in Northeastern Nigeria and South Sudan. Our findings highlight the ways that the production and use of data in itself generates challenges for the participation of affected communities, with protection outcomes compromised by a range of contextual, specific and systemic barriers.

Northeastern Nigeria and South Sudan

Northeastern Nigeria has seen terrorism and armed conflict over a number of years, including insurgencies by the Boko Haram sect in the 1990s, later allied with the Islamic State West Africa Province (ISWAP). This has led to deaths, the loss of livelihood and key support systems, and multiple displacements. Findings from our research suggest that there are lapses in the data ecosystems in Nigeria, with likely consequences of imprecise and inaccurate data on humanitarian assistance and planning.

South Sudan gained independence on 9 July 2011, enabling the return of millions of displaced persons. However, due to the outbreak of civil war in 2013, ongoing political battles and intense violence, largely along ethnic lines, has caused catastrophic repercussions for civilians. As of 2021, 2.34 million South Sudanese were refugees in neighboring countries while another 1.615 million were IDPs. Despite resolution in 2018, our research indicates that the generation and management of data on IDPs in the country have significant shortcomings.

Exploring the Challenges:

1. Technological and infrastructural barriers

In Northeastern Nigeria, there are both personnel and equipment gaps, which limit capacities for data collection and storage. The lack of equipment and well-trained personnel limits the coherence of data storage and handling processes, which differ across organizations. Divergent data banks across institutions and actors, along with reliability and systematisation issues in some cases, mean that there is a multiplicity of data.

Most South Sudanese NGOs do not generate sufficient and reliable financial resources by which to acquire the necessary expertise and material resources. UN agencies and international organisations are better positioned to acquire and deploy the required capacity to generate and manage data. Representatives of international organisations that we interviewed confirmed use of tablets to undertake headcounts and profiling for returns.

2. Procedural and Administrative barriers in defining vulnerability

Both stakeholders and IDPs highlight irregularities in the classification and identification of the most vulnerable IDPs in camps in Northeastern Nigeria. Many ‘fall through the cracks’ of protection because classification issues both at the point of registration and within the data subsequently collected for planning purposes lead to many needing help being overlooked.

While some stakeholders in South Sudan are involved in projects targeting vulnerable groups as well as general protection needs, many IDPs who we interviewed in camps suggest that the needs of some vulnerable people are not addressed. Those likely to ‘fall through the cracks’ of protection are victims of sexual violence, which is a significant but culturally sensitive issue in South Sudan.

3. Ethical barriers

There is an inconsistent and inappropriate ethical system for data collection from IDPs in Northeastern Nigeria. Many IDPs describe consent as verbal, without proper recording or written documentation and with limited information. In some instances, data collectors do not directly obtain consent from IDPs, but instead, go ahead with data collection after stating the purpose and approval from higher authorities.

In South Sudan some IDPs interviewed for this study expressed distrust or fear about people coming to collect data from them. Some IDPs agreed to give consent because their community leaders agreed to the data collection, and some complain that those who collect data from them do not return and fail to provide feedback.

4. Systemic barriers

Technological innovations intersect with donor pressure, donor agendas, and our research highlights the role of inter-agency competition over finite resources and funding. Data-driven humanitarian assistance is clearly a contested terrain with implications for IDP participation and humanitarian outcomes. Our research indicates that IDPs often have different understandings to humanitarian practitioners of the value of sharing data and expectations of what it should be used for. One told us:

‘I did not ask them. I would want to ask them, but I did not, they came to collect data like you are doing now, but they disappeared’

Conclusion

In reviewing data-driven humanitarian assistance in IDP camps in Northeastern Nigeria and South Sudan, our research points to a range of barriers to improving protection outcomes: technological and infrastructural, procedural and administrative, as well as ethical. Our findings suggest that this requires further investment in personnel and technological infrastructure, more careful attention to classification processes in the identification of vulnerability and need, plus improved ethical practices that take informed consent seriously.

Profile of Authors:

Funke Fayehun, Associate Professor and Head of Department of Sociology, University of Ibadan

Briony Jones, Reader of International Development, Politics and International Studies Department, University of Warwick.

Leben Moro, Director of the Directorate of Scientific and Cultural External Relations, University of Juba.

Vicki Squire, Professor of International Studies, Politics and International Studies Department, University of Warwick.

Notes:

[i] Data and Displacement: Assessing the Practical and Ethical Implications of Targetting Humanitarian Protection is funded by the UK Arts and Humanities Research Council and Foreign, Commonwealth & Development Office (AHRC-FCDO) Collaborative Humanitarian Protection Programme (grant AH/T007516/1). We would like to thank the wider research team for their work on this project, including João Porto de Albuquerque, Dallal Stevens, Rob Trigwell, Ọláyínká Àkànle, Modesta Alozie, Kuyang Harriet Logo, Prithvi Hirani, Grant Tregonning, Stephanie Whitehead, HajjaKaka Alhaji Mai, Abubakar Adam, Omolara Popoola, Silvia De Michelis, Ewajesu Opeyemi Okewumi, Mauricio Palma-Gutiérrez, Funke Caroline Williams and Oluwafunto Abimbola. The project team undertook a total of 140 semi-structured qualitative interviews in Northeastern Nigeria and South Sudan, 100 with IDPs and 40 with practitioners, split equally across the two locations. The team has also conducted semi-structured qualitative interviews with a total of 42 humanitarians who have expertise in data and information management, from across a range of international organisations and NGOs. We would also like to extend our thanks to Annika Sirikulthada, a University of Warwick Research Assistant who suported preparation of the blog.

Mouzayian Khalil : 15 Dec 2022 15:27 |  Tags: Data-Driven Approach Displacement Humanitarianism Migration Nigeria South Sudan |  Comments (0) |  Close comments |  Report a problem

Informal networks as sources of healthcare support

Informal networks as sources of healthcare support: How slum dwellers cope with health challenges by talking to each other

Photo by Sheyi Owolabi on Unsplash

Blog written by Chinwe Onuegbu

Access to quality healthcare is a fundamental human right, but this remains a struggle for people living in slums in low and middle-income countries. The term “slum” can be controversial but it is used in this article, in line with a larger project under which the research described in this article is based, to describe poor urban settlements characterised by overcrowding, poor housing structures and an overall shortage of social and health amenities. Globally, one in eight people reside in slums or poor urban settings, and in many African countries, including Nigeria, about 60% or city dwellers live in slums. Public health services in urban cities do not sufficiently cater to people living in the slums, and many are unable to obtain the comprehensive formal healthcare they need.

Staying healthy and fit is particularly essential for people living in slums. Many engage in informal jobs with daily wages, and maintaining health is crucial for maintaining daily household income.

In the face of inadequate formal healthcare services, slum dwellers turn to alternative healthcare options. It is important that we begin to understand these alternatives in order to mitigate any negative consequences and to amplify potential synergies.

My PhD study within the NIHR-funded slum health project

My PhD project was nested within the NIHR funded slum health unit at Warwick Medical School. The unit worked collaboratively with universities in Asia and Africa to map and understand use of health services in slums across both continents.

With my background in Sociology, I recognised the untapped opportunity to explore how health was managed beyond formal medical settings in the slums. My thesis explored a phenomenon known as lay consultation: how people manage illnesses and health challenges by talking to informal network members (e.g. family, friends and neighbours) or other informal online forums or resources (e.g., Facebook friends) beyond medical settings. My study population were the working-age adults in slums in Ibadan (Oyo state), Nigeria, and they were chosen because they were more likely to migrate in and out of the slums, be engaged in work that make them unable to seek care when needed and are likely to own and use mobile devices. These dynamics can shape lay consultation behaviours and network composition. The project adopted a mixed method approach. First, a survey to map how common lay consultation was, which network members were contacted and how influential were informal network members in determining people’s treatment behaviours. Next, interviews were conducted to understand in more depth the connections between speaking to others about a medical problem and actions taken afterwards. The study was done in collaboration with partners from the University of Ibadan, Nigeria.

The study found that most people experiencing illnesses consulted 1-3 network members including family, friends and neighbours. People navigated through the complexities of social life in slums such as having fewer networks due to busy life and difficulties in having trusted or dependable sources of support, to find people they could talk to. Participants rarely used online informal networks, mainly because many did not have access to such devices, had limited digital literacy, or preferred physical networks. The informal consultations were largely unplanned and taken-for-granted as they were ingrained in everyday life. Yet, within those informal conversations, were exchanges of advice and support- some useful and some not, that shaped how people managed illness experiences.

A striking finding from this study was that, despite living in the slums where the harsh conditions may drive over-reliance on informal networks for health maintenance, slum dwellers were highly agentic in using advice or support from others. People had strategies for coping with health challenges which included ability to assess the relevance of advice they received. Occasionally, they consulted other informal health providers such as local medicine vendors (known locally as ‘chemists’) and traditional healers to confirm advice they received from their network members.

So what?

We now know from this study that lay consultation, that is talking to informal network members, is a common way of managing illnesses in slums. The conversations- whether intended or unintended- contribute to management of personal health. There is a potential to leverage on informal networks to improve knowledge about health conditions and health care access, thereby contributing to strengthening of the health system in poor urban settings. Informal networks, including those existing online, should be recognised as an integral part of the overall health system, and incorporated into health policies and programmes as a means of increasing the coverage and effectiveness of health interventions.

Next steps:

The next step involves working with collaborators at the University of Ibadan, Nigeria on an intervention around lay consultation for slum communities in Ibadan, Nigeria. Our initial idea is to co-design an online health-resource that would provide formal, verified and accessible health advice for people living in the slums. People feeling ill or having health challenges can consult the online resource as part of steps taken to inform their health-seeking decisions. We will work with policy makers, community members and concerned organisations such as NGOs to co-design and promote the resource.

An internal seed fund grant has been obtained from the Warwick International Partnership fund (IPF) to kick start this project. The funding will be used to:

• Disseminate findings from the PhD to study participants, key stakeholders and the general public,
• Engage representatives of slum communities and public health policy makers at the state level in Nigeria to assess the value of lay consultation as an intervention to improve health outcomes
• Build a multidisciplinary collaborative research team from across public health, information technology and social science and other stakeholders (such as Non-Governmental Organizations) for future research on leveraging lay consultation for health benefits in the slums.

In conclusion, interventions that are bottom-up, innovative and interdisciplinary approaches have the potential to tackle the complex issues in slums. The PhD project and planned intervention discussed in this blog exemplify how the intersection between social science and health science can improve health in slums.

Author Bio:

Chinwe Onuegbu is a Research Fellow at the Division of Health Sciences, Warwick Medical School, University of Warwick, UK. She recently completed her PhD in Health Sciences at Warwick Medical School. Her research interests include the social determinants of health in resource-constraint settings, and the role of information and communication technology (ICT) in healthcare in low- and middle-income countries. She is also interested in research communication and hosts a Research chat show on YouTube in her free time.

Mouzayian Khalil : 19 Oct 2022 12:33 |  Tags: Health Care Informal Health Support Nigeria Urban Poor |  Comments (0) |  Close comments |  Report a problem