Health

This blog was written for World Cities Day, 31 October 2020. The theme this year is Valuing Our Communities and Cities. People in informal urban settlements deserve our support and solidarity. In the blog we explore how they are experiencing some of the secondary effects of COVID-19 and mechanisms that could strengthen the ways that they are involved in the pandemic response.

Current upheavals highlight longstanding socioeconomic inequities that continue to raise difficult policy and accountability questions. Some forms of vulnerability are more discernible than others. Nearly one billion people live and work in informal, under-serviced, and precarious urban conditions. Before COVID-19, these communities occupied a peripheral and precarious space, both physically and in the imaginations of those in power. Such spaces are often rendered invisible and excluded from city-wide processes of development, at other times hyper-visible as sites of chaos or calamity.

Non-COVID-19 related health care

Our colleagues in Sierra Leone have argued that people living in informal urban settlements are more pre-disposed the chronic conditions which affect COVID-19 but that this is under-explored.

“The ‘slow violence’ of informal settlements includes everyday exposure to poorly managed waste, dust, smoke, fires, floods, disease vectors, long journeys across cities on overcrowded shared transport which can spread infections, occupational hazards, crime, but also insecurity, stress, lack of accountability, discrimination, abuse, invisibility, exclusion from economic and political power, and an inability to claim and maintain basic rights or services.”

In all contexts we work in lockdown has led to mental health strains and greater stress and anxiety are reported as precarious existences deepen with continued containment. Lockdown itself is troubling but also the loss of income that comes with it. In Sierra Leone we have documented detrimental psychosocial effects on health care workers as well as interventions from the Ebola epidemic that may help alleviate some of this burden. In Kenya as in other settings, access to healthcare has been disrupted. This has impacted particularly on mothers and children, residents with chronic conditions and the elderly.

“Individuals with chronic illness suffer a lot as they need specific medical attention, yet …we lack timely and adequate information on treatment of chronic illness…. Sometimes when they access the information, we lack money to buy drugs during this outbreak as many people have lost jobs…”

In India the heightened cost of transport to facilities and of services is having a troubling effect. Fear of infection is leading some to rely more on private pharmacies.

Economy and food security

COVID-19 has pushed previously financially stable people across informal settlements into poverty. For example in Dhaka, Bangladesh, the pandemic led multinational companies to cancel orders to garment factories plunging this workforce, who mainly live in informal settlements, into precarity. There is risk of malnutrition and starvation as day labourers are prevented from earning an income. COVID-19 has disrupted traditional networks of support. People are resorting to loan sharks as rent and food are hard to buy on credit. They are relying on community/family members, collecting cash from friends. Local crime rates have also risen. How long can this go on for?

When people are in ‘obhab’ (scarcity), people tend to fight more, they tend to resort to stealing. There is a chance of increasing crime in this community. I am worried that theft and crime will increase in our community.

In India, as elsewhere the work of ‘waste pickers’ and other sanitation workers is vital to the cities they work in, particularly now when the need for a sanitary environment is at its greatest and there has been an increase in biomedical waste. Yet, they remain ‘invisible’. Despite their key role, the provisions put in place to ensure their safety in the pandemic are inadequate. For example, aid meant for vulnerable populations, is often based on certificates of citizenship which denies these communities eligibility for many forms of relief, leaving them no resort but philanthropy and luck.

“We are Indians! I have all the documents like you have, to prove that I am an Indian: voter ID, ration card, Aadhar card…But we do not get rations since the ration cards are based at our homes, which we moved from six years ago. I transferred my Aadhar card because we cannot get jobs here without an Aadhar card and PAN card.”

This has been exacerbated by brutality in policing of lockdowns, targeted as informal communities, a troubling pattern that has been seen in many countries including Kenya. A community member in India said:

When we tried to resume work after the lockdown, we were troubled by the police. They said we give rations and all that, then why do you need to get out? But rations are not much. If the NGO had not supported us then, we don’t know what we would have done. We would have died of starvation before corona hit us.

The health system alone cannot solve these issues which require multi-sectoral approaches to address the structural, economic, patriarchal and social inequalities poor people face.

In Bangladesh, as elsewhere, we have seen stigma and discrimination against households affected by COVID-19. The coronavirus is seen as contagious and fatal disease. As a result, there are fears of quarantine and isolation or being locked up and never seeing one’s family again. Red flags are placed in homes of infected people and the media pictures of death, and bodies being thrown in separate burial grounds stokes fears that people will be buried without the appropriate religious ceremony. Fears of getting the virus have resulted in surveillance of others, under-reporting, harassment of family members with spouses returning from abroad, harassment of people with flu-like symptoms and suspicions about outsiders.

Treatment of women and children

In Kenya and elsewhere there have been increases in reports of Gender Based Violence (GBV) in informal settlements since COVID-19 began, and lockdowns and curfews were put in place.

Women are the hardest hit by COVID-19, they are primary caregivers of individuals who are ill during COVID-19 pandemic… Women are not the decision makers in most families and as such, the money they make in a day to day activity ends up in the hands of men in the family.

In Kenya, people with disabilities make up 10 percent of the population, an average of 4.4 million people. 66 percent of these people live in rural areas while 44 percent are in urban settlements, mostly for work purposes. Due to the rise of sexual harassment and domestic violence, disabled people have been majorly affected and abused by a spouses, parents or caregivers. The frustrations of lack and mental stress makes them among the more vulnerable victims. This causes unwanted pregnancies and contracting sexually transmitted diseases.

Conclusion

We need to address the situation of the urban poor through context-specific policies and action in the COVID-19 response. We should not think of the urban poor as a homogenous group, so data must be disaggregated (by gender, age, occupation, ethnicity and other axes of inequity). Longitudinal qualitative research is critical to capture impact now and post-pandemic. We must also reframe health beyond a biomedical (disease model) approach and put in place socially just models with the well-being of communities and people at the centre. Health decisions and policies must be balanced with social and economic interventions.

Communities have the potential to mobilise and take action to address life-threatening experiences. For example in Sierra Leone, FEDURP members’ action in Thompson Bay supported quarantined homes with drinking water while government support was delayed. In Funkia FEDURP members used the fund generated from the public toilet they manage to give out revolving loans to their members to revitalise their livelihood sources.

There is an urgent need to bridge the gap between formality and informality through recognition and inclusive participation so that the needs and aspirations of informal settlements can be addressed. There is a growing need to recognise and draw on community knowledge, creativity and capacities, which is the basis of first responses during pandemic.  Governments should place communities at the centre of development aspirations and actions and work with them to develop appropriate support.

This blog draws on the work of Kate Hawkins, Sabina Rashid, Joseph Etyang, Janice Cooper, Bintu Mansaray, Rosie Steege, Caroline Kabaria, Sally Theobald, Blessing Mberu, Laura Dean, Haja Wurie, JK Lakshmi, Joseph Macarthy, Hayley Macgregor, Karsor Kollie, Joanna Raven, Lilian Otiso, Rachel Tolhurst, Annie Wilkinson, Abu Conteh, Beate Ringwald and Francis Anthony Reffell.

By Kim Ozano, Abu Conteh, Laura Dean and Kate Hawkins

ARISE will engage with communities in participatory method design, data collection and analysis to develop priorities and actions. To make this a reality we are debating the community based participatory approaches we will use. It’s a rich and challenging discussion! In this blog we outline some issues which are taxing us. How can we build on existing community strengths? How can we ensure that the most marginalised community members are included in our research? What safety challenges will we face in the research process? So, if you have experienced any of the same dilemmas, please comment below. It would be great to talk and share experiences!

How to build on existing community structures

ARISE wants to engage and work with existing community structures and processes. However, how to do this is not straightforward. We have had a lot of discussions about the best way to introduce the project and how to capitalise on the strong work that is already underway in relation to accountability and health.

Researchers and co-researchers (their community counterparts) recently met in Sierra Leone. There is a lot going on in the informal settlements of Freetown. Community members are actively collecting data contributing to local development and advocating for change. Because of this, co-researchers wanted to take advantage of these pre-existing structures in the ARISE research. They felt very strongly that setting up parallel ‘research specific’ systems was risky because they might not properly respond to the situation in informal settlements.

For example, representatives from the Federation for Urban and Rural Poor (FEDURP) believed members who are community mobilisers would be good at raising awareness and explaining the purpose of the research. However, communities didn’t always think these community mobilisers were ‘trustworthy’. As a result, other FEDURP members – who are passionate about accountability and health – might be better at data collection or facilitation. These passionate change makers need to be identified by community members as opposed to being handpicked by powerful community members. We discussed how incentives can compromise organic processes to identify change makers and should only be offered later in the research process. Therefore, the process of selecting co-researchers was systematic, trying to select the best from FEDURP, community representatives and community mobilizers. Selection was based on skills such as facilitation, mobilization, community activism and awareness raising skills, particularly on health.

Defining researchers, co-researchers and participants

FEDURP felt part of the ARISE research consortium, particularly as they had been part of the original consortium planning process. They were confused about whether this made them co-researchers or researchers. FEDURP is a representative organisation for people living in informal settlements. Does this immediately make all its members co-researchers? If FEDURP is a core-part of the ARISE family, should all co-researchers in Sierra Leone be members of FEDURP? Members of FEDURP, who also live in informal settlements, became further confused when they considered that they could also be ‘participants’ in the research process.

As we moved through our conversations it became clear that co-researchers should not be considered a uniform group with a ‘one-size fits all’ definition for their engagement, roles and responsibilities. Community members and organisations might move through different positions/spaces of participation in a fluid way. Co-researchers and researchers must develop trust with each other, the process cannot be forced or pre-designed, rather organically developed alongside the research.

How to facilitate the engagement of marginalised groups

Pre-existing community platforms for engaging co-researchers are unquestionably valuable to a new research project like ARISE. However, we want to ensure that marginalised or vulnerable community members are equitable participants in the process. These people may be less able to participate in pre-existing community development and advocacy. So, we will need to look for new ways of engaging to make the process inclusive.

We have been grappling with the dilemma of what to do when marginalised groups are disempowered and as a result unable to participate as co-researchers. Co-researchers – who have local knowledge on what is feasible and acceptable – could adapt participatory methods to better engage marginalised groups. Getting a better understanding of how marginalised groups like to communicate (e.g. through storytelling, drama, drawing pictures) and working with them to create outputs may help them feel more empowered. Informal discussions and ethnographic observation – interacting with marginalised groups in their own settings – might spark ideas. We also considered using ‘gatekeepers’ (or powerful people or institutions who provide an entry point to marginalised communities). For example, disabled persons organisations will usually know how to communicate with their constituency and support their participation.

Working with children and young people

Children and adolescents in urban informal spaces are often vulnerable to ill-health and have difficulty accessing accountability. However, we are concerned about how to ensure that we have a clear process of consent for their engagement in the research. Often children do not have a parent or guardian that can agree to their participation. We must strike a balance between the democratic principles of participation and empowerment and the ethical challenges of appropriate management, support and protection. Collaborative projects with young people are key to understanding their experiences of health and well being. But young people are often excluded from, or left out of, research projects.

Other marginalised groups

People with cognitive or intellectual disabilities may not be able to provide consent through conventional processes and we will need to account for this in the way we work. Sex workers and  LGBT people may not want to be involved because they don’t want to be identified. These groups might be reached through community agents who have connections with them. We will continue to explore this ongoing dilemma during our research.

How to minimise risk and harm

We want to ensure our work is ethical and that people are safe. Community members and co-researchers might be put at risk if: tensions arise about the choice of co-researchers; communities are hostile to data collectors; or the findings of the research cause ructions.

Our discussions have thrown up a number of strategies to mitigate risk. We will involve communities in selection of co-researchers. That way they have ownership over the process and are more likely to support the research. We will try and be open and transparent in our working practices – communicating our intentions and the process. Research teams will keep an open dialogue going to keep abreast of emerging risks. It is important that ethics and safety are central to researcher training on participatory methods. They will be are aware of the boundaries of their role as researchers and put the safety and wellbeing of communities first.

Concluding reflections on participatory research

As ARISE is rolled out, we are thinking critically about power and participation. What does this mean in practice and in terms of generating equitable research partnerships?  We are particularly keen to disrupt the balance of power between ‘researchers’ and the ‘researched’. Working through ethical dilemmas together and documenting this process will help us to learn and share with the wider research community.

There is no single blueprint for participatory research. It is a process rather than a set of uniform steps with predictable outcomes. Because we all come from different starting points, we have created an internal community of practice to exchange ideas.

We welcome, through the comments below this blog, insights from others who have experienced similar dilemmas.

By Lynda Keeru

Communities are the most tested by the coronavirus pandemic (COVID-19). Those that are most feeling the consequences are the poorer communities where its implications will be massive and may unfortunately undo many of the strides and gains made especially in public health and health systems. Governments, health practitioners, NGOS/CSOs are hell bent on ensuring that development gains are not reversed.

In a webinar organized by Community of Practitioners for Accountability and Social Action in Health (COPASAH) stakeholders from different fields highlighted the challenges they are facing in responding to this pandemic and the effects it has had on communities. Five speakers from Uganda, Liberia, India and Macedonia meant there was representation of nearly all the continents. This blog highlights some of the challenges and some of the different ways stakeholders are working around the pandemic to provide essential health services to their communities and hold governments accountable.

Some challenges cut across the board while others are specific to individual countries. A common challenge is the fact that health workers don’t have permits to move around which restrains them from providing the very much needed services especially in the wake of lockdowns/curfews in most countries. Many countries are concerned with ensuring that governments do not forget their roles and obligations in ensuring that women do not die unnecessarily, especially during childbirth.

Maternal mortality and reproductive health

In Uganda for example, there has been a rise in maternal mortality because pregnant women are having to walk long distances when heavily pregnant to get permission to get to a facility. This has meant that women are dying by the roadside, delivering by the roadside and even being pronounced dead on arrival at the facilities.

Advocacy efforts are already underway with letters written to the President to report the rising cases of maternal mortality cases and the challenges being experienced by the women like the lack of public transport. The letter suggested solutions like the government allowing a few ‘bodabodas’ to be in operation in order to ferry these women to the health facilities.

Through concerted advocacy efforts, antenatal visits have now been restored in Uganda and the same for access to family planning which is essential.

Lack of COVID-19 preparedness

One of the issues that seemed to affect most of the countries was the fact that a lot of attention is being accorded to COVID-19 in health facilities which leads to sidelining of the rest of the services. This causes delays which again puts the women and all other patients at high risk of contracting the disease. The preparedness for handling of COVID-19 in many countries and health facilities is low. Facilities may not have separate wings/rooms to handle COVID-19 patients.

Human rights

In Uganda, efforts have been put in place to counter human rights violations and harassment especially from the police. Legal experts have been engaged to provide legal aid counsel which ensures that people especially at the community level have access to legal services. The advocacy efforts have been around the engagement of the police and government by lawyers to urge them to respect and uphold the rights of the people. The presenter also highlighted that there were reported cases of mothers being restricted from accessing cancer services, Maternal Newborn and Child Health (MNCH) as well as cases of young people experiencing challenges accessing family planning (FP).

The presenter from Uganda drew special attention to the fact that their President was active on social media and responds to issues raised on the various social media platforms resulting to social media becoming a key tool for advocacy. The lawyers and other legal practitioners in Uganda also got together and wrote to the World Bank (which like in many other countries has given money to Uganda to tackle the pandemic) to request that the World Bank helps them hold their government accountable by asking the Ugandan government to reveal to them how they plan to use this money.

Macedonia is also experienced challenges regarding police harassment toward the marginalised Roma community. However, this is being countered by the effort NGOs are making to ensure that the Roma community are exercising their right to health and also right to services.

In Mumbai people are being denied health care services until they test negative for COVID-19 yet according to the guidelines, health care providers should not deny people care. However, due to the lack of COVID 19 test kits, hospitals continue to do this. Some patients with chronic diseases are really suffering as they are being denied care from fear that they may have COVID-19. Private health care facilities in India account for the highest number of spread of the COVID-19 among health care workers and this has been due to the fact that infection control protocols have not been implemented properly and PPE is not distributed according to the protocols.  Harassment of patients and their support systems has also been witnessed like in the case of a wife who was told that she would be subjected to daily testing of COVID-19 if she were to be allowed to visit her husband who was admitted for a different illness.

Civil society and private sector involvement

Unlike many other countries around the world, Liberia has managed to have the civil society represented on the national committee for COVID-19 response which is an important measure as they are key players in this pandemic and many other fields and their voice at the table cannot and should not be overlooked.  Their representation at the national committee helps to push the various advocacy agendas and countries represented on the webinar were urged to borrow this from Liberia to help them enhance their advocacy efforts.

Medical support groups have played a central role in India. This is very commendable as it supports health workers especially nurses to be at the table as their voices are often not represented most of the time. In India, a diverse private sector plays a role as opinion leaders and give direction on how they think the response should be handled. However, the general challenge observed in these private institutions is that they are trying to still make profits even in the wake of this crisis and make up for the losses they have made which leads to issues like them overcharging PPE and a general inflation of costs.  They also put their patients at high risk of contracting the virus as one PPE kit is often used across different patients in wards much as each patient is paying for a kit.

While there seem to be insurmountable challenges in the response to COVID-19 and the effects it will have on health systems and the reversal of health gains made over many years, the collective efforts being put in by health and legal professionals across the world serves as a beacon of hope. It’s expected that the world will be very different post-COVID-19 but the hope is that the effort jointly being put in in different areas like innovation, creativity and capital will keep drawing people together and people will keep having a continuous need for a community and each other.

Acknowledgements:

Many thanks to the speakers in the COPASAH webinar:

• Noor Nakibuuka Musisi-CEHURD, Uganda
• Zoran Bikoviski-NGO KHAM, Delcevo, Macedonia
• Inayat Singh Kakar-Medical Support Group (Delhi) & PHM, India
• Joyce L. Kilikpo-Public Health Initiative, Liberia
• Dr. Amina Magashi Garba- COPASAH Co-Convener, AHNBN, Nigeria