“I do think that I did pick up some kind of cue about this disease not being an ‘open disease’ from all of the non-verbal communications happening around me… Firstly, with the doctor who diagnosed me. He did not look into my eyes and he did not talk to me in a way that I’m normally used to being talked to.
“Somewhere the stigma exists among the medical fraternity, for sure. I have enough stories that I’ve heard that show it does exist. There might be a cue given to the patient [from the healthcare professional] that says ‘you’re no longer touchable’.”
Jayashree recognises the stigma she experienced from a healthcare worker
These are the reflections of Jayashree, a person affected by leprosy in India. Her experience and the stories she has heard from others are not limited to any one place, they are sadly present across the world. There is a problem with leprosy-related stigma amongst healthcare workers.
It is this issue that Yohanna Abdou from TLM Niger is looking to address. He wants to know to what extent does improving the knowledge of healthcare workers reduce their stigmatising behaviour towards leprosy patients in health services of endemic areas in Niger.
Of course, healthcare workers' stigmatising attitudes towards leprosy mirror that of the larger society’s, and whilst there has been plenty of research into leprosy stigma, there has been little research into stigma that is specific to the healthcare sector. Yohanna must address that gap before finding solutions.
Using funding from the Leprosy Research Initiative, Yohanna is looking at what is driving this stigma among healthcare workers in Niger and how this stigma manifests itself. Once he has determined this, he intends to use education and awareness efforts that will be co-designed and co-implemented by persons affected by leprosy to tackle the stigma surrounding leprosy among healthcare workers in Niger.
The project is being operated in partnership with IDEA Niger, the Niger Leprosy Control Programme, and the University Abdou Moumouni Niamey.
Using the WHO Stigma Framework, Yohanna is going to identify the local and contextual drivers, facilitators, and manifestations of stigma among healthcare workers. As well as this, he is hoping to determine the effect that this stigma is having on persons affected by leprosy in Niger.
This will be made possible by conducting in-depth group and individual interviews with healthcare workers from each of the 16 participating health centres in Niger. By the end of this phase of the project, Yohanna will have interviewed a minimum of 40 healthcare workers.
As well as this, Yohanna will conduct group interviews with 80 persons affected by leprosy to explore their experiences of stigma and discrimination in the healthcare setting.
Yohanna and his team believe that much of the stigma may derive from fears of infection, social judgement, and learnt habits and beliefs that have been developed through cultural norms, but these working theories can only be confirmed, amended, or corrected through the interview stage of this research project.
Once the data has been collected from the interview process, Yohanna and the team will produce a report on what is driving leprosy stigma in the healthcare context and how this stigma manifests.
The second stage of the project requires Yohanna and the team to work on solutions to the problems that they have identified.
Although there is no substantial research into leprosy stigma among healthcare workers, there has been research into HIV stigma amongst healthcare workers and how that stigma can be tackled.
Yohanna will use the findings from their research and the tools that have been developed to tackle HIV stigma to develop new tools to tackle leprosy stigma among healthcare workers. They will work with persons affected by leprosy to analyse the findings and develop the tools.
They will develop educational tools together that will initially be trialled with 10 healthcare workers. Their intention is that these tools will be both co-developed and co-delivered by persons affected by leprosy.
Six months after healthcare workers have engaged with the educational tools that Yohanna and the team developed, the team will return to the healthcare workers.
At this point, the healthcare workers’ leprosy knowledge will be tested and scored and the team will consider issues like the desired social distance a healthcare worker wants from a person affected by leprosy.
They will conduct focus group interviews with healthcare workers to explore their experiences of the training and its impact on their behaviours and attitudes.
Importantly, the team will also talk to persons affected by leprosy about their experiences of the care they have received since the training and to identify any changes in the healthcare workers.
Yohanna has made persons affected by leprosy central to this project.
“For me, the presence of persons affected by leprosy throughout our work is what gives us the best chance of success. IDEA Niger have been involved since the very conception of this project and will be involved right to the end.
“Ultimately, this project is about their experiences. That means we can only define the problem through their knowledge and experience and we can only determine the success of the solutions through them. In between those things, we need their continued input to develop and implement our approach to tackling stigma.”
The project started at the beginning of 2022 and will run for 42 months, after which Yohanna and the team hope to have new insights and tools that will allow us to tackle leprosy stigma in healthcare contexts across the world.
Front cover photo credit: Ricardo Franco
© Ruth Towell
Yohanna Abdou, TLM Niger
