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

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.

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).

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.