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.
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
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).
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.
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.
“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.
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.
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 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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