How participatory research can change the lives of people affected by NTDs

An illustration of a man with a walking stick walking a long road, with a hospital far in the distance.
A local artist has created illustrations based on the research findings. @Christian Okwananke

Neglected tropical diseases (NTDs) affect more than a billion people worldwide and can cause severe and lifelong physical impairments. Those most affected include people living in the poorest and most rural communities.

Mass administration of medicine (MAM) for these diseases is well established and strives to be as inclusive as possible in taking into account the perspectives of people with disabilities. However, morbidity management and disability prevention (MMDP) services remain largely underfunded and are poorly accessed. MMDP programmes rarely have input from the individuals who have been directly affected, meaning they cannot fully grasp the challenges faced by the people they exist to support or design interventions that are responsive to all their needs.

For the research team, this is a crucial gap to explore. It’s also one which has become more important than ever during the COVID-19 pandemic, where there are increased barriers to treatment and people with disabilities face a greater risk of infection. That’s why our research in Nigeria to understand the lived experiences of people affected with NTDs is critical. I’ve been on the ground throughout the project, facilitating the participation of patients and health workers, and working with the programme planners as they design and implement agreed changes.

Children in Malawi queue up to have their eyes checked by an eye health worker.

What are neglected tropical diseases?

At Sightsavers we help to treat and prevent five debilitating diseases that affect more than a billion people. These parasitic and bacterial infections are known as NTDs.

More about NTDs
A group of people look at a wall where cartoons representing the research are shown.
Co-researchers and policy makers discuss the findings and co-plan how the programme should respond.

Leaving no one behind

MMDP programmes are designed for people who have symptoms associated with longer-term infections or permanent disabilities due to NTDs. Their needs go beyond the administration of medicines. They often struggle to access health care services and are the most likely to be left behind as they will still be affected after elimination and as mass drug administration campaigns come to an end.

The research I’m working on in Nigeria is being conducted in Kebbi (a state with an existing MMDP programme) and Benue (a state where a new MMDP programme is planned). We’re working in partnership with the federal ministry of health in Nigeria and the Liverpool School of Tropical Medicine (LSTM).

We’re using a community-based participatory research (CBPR) approach. This means that, in addition to the researchers from Sightsavers and Liverpool, we’ve trained frontline health care workers and people living with NTDs to be ‘co-researchers’. These co-researchers help to gather evidence, analyse it, share what is discovered and plan the programmatic response. We’re working closely with CBPR specialists, Margo Greenwood at Sightsavers, and Laura Dean and Shahreen Chowdhury from LSTM. This kind of research seeks to break down social injustice and power structures and formalise tacit knowledge held by communities.

“This kind of research seeks to break down social injustice and power structures.”

An illustration of a man helping an elderly woman with a walking stick onto a hospital bed.
Many people with NTDs wanted to be examined by health workers of the same gender. @Christian Okwananke

What the research is telling us

After the co-researchers carried out face-to-face interviews and focus groups with patients and health workers, we organised a workshop to collectively analyse the data. We found several barriers prevented people with NTDs from accessing formal health services, including poor knowledge of the cause of illness, misinformed cultural or traditional beliefs, poor health literacy, and fear of surgery. Long distances, difficult terrain and lack of transport were also identified as structural barriers preventing people from accessing health facilities.

“It's been really mind opening.” Watch a video from Martins explaining more about the research.

An illustration of a woman crying. Coins are falling out of her pocket.
Many people with NTDs worry about whether they can afford treatment. @Christian Okwananke

People affected by NTDs described the psychosocial impact of the diseases. This included abuse, stigmatisation, and being excluded from household and community decisions. They also shared shared feelings of depression, worthlessness, and low self-esteem. Others described how their life plans had been affected as NTDs had led to the disruption of academic and career pursuits, often culminating in the loss of their livelihoods and inability to afford treatment.

We found that these impacts can be overlooked by the health care system and made worse by the attitudes of some health workers. Many people with NTDs preferred to be examined by health workers of the same sex and expressed the need for them to show more empathy and consideration to help restore their confidence and trust.

Health workers reported a lack of training and skills needed to diagnose and treat NTDs. They shared that they often faced extreme pressures due to ill-equipped facilities and staff shortages, affecting their morale and motivation.

First-person experiences

“I do not have anybody that can help me. If it was when I was working I would have been able to help myself, but now I cannot do anything.” – Male patient with chronic symptoms from an NTD.

“I started primary school but did not complete it mainly due to my health condition.” – Female patient with chronic symptoms from an NTD.

“If health workers are not trained, they will not have knowledge with which to enlighten the community members.” – Female community health worker.

“People affected by NTDs shared feelings of depression, worthlessness, and low self-esteem.”

A group of people sit pointing and staring at a man who sits alone.
People with NTDs described stigmatisation and exclusion due to their condition. @Christian Okwananke

Bringing research findings to life

We asked a local artist, Christian Okwananke, to create illustrations based on the findings. These were used in meetings with national and state programme planners where the findings and proposed solutions were discussed. The illustrations were relatable and helped to kickstart conversations in a non-confrontational way.

After a series of discussions, the programme planners agreed to prioritise two areas for the programme to revise. One was to adapt health workers’ existing training documents to include information on mental health and gender awareness. The other was to develop community resources (using illustrations) to address stigma and increase knowledge around the causes of NTDs and the treatments available.

For me, this showed how research findings can lead to programme adaptations in such a way that all parties feel valued throughout the review process and can contribute their unique strengths and perspectives.

Local artwork is helping to bring this research to life for the benefit of people with NTDs, researchers and programme planners.

A illustration of a man in a white medical gown shouting at two men who are sat on a bench in a hospital.
The attitude of health workers can prevent people with NTDs from accessing healthcare. @Christian Okwananke

Personal reflections

Although many NTD activities have been suspended due to the COVID-19 pandemic, we have used the time during lockdown to develop materials so that as soon as programmes get back up and running, we can readily implement and evaluate the changes. We’ve also been working with the ministry of health and Christian, the local artist, to develop similar illustrations on COVID-19 messaging.

On a personal level, this research has helped me to see first-hand how people living with NTDs can be empowered to voice their views, and how open discussion can lead to better programme design. There is a clear need to rethink the ‘top-down’ approach and use participatory research to capture the voices and experiences of otherwise unheard people, ensuring that they can input into the decisions which affect them.


Martins Imhansoloeva.

Martins Imhansoloeva is a trained epidemiologist and research coordinator based in Sightsavers’ office in Nigeria. He works closely with the Ministry of Health, programme teams and other researchers on a variety of projects including health systems strengthening and research into lymphatic filariasis and river blindness. Twitter

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