How do we bridge the gender gap in leprosy cases?
In leprosy case detection, women average around 39 percent of all new cases found each year. This is not because of a biological predisposition amongst men, but more likely a result of social factors.
Our teams in Bangladesh and Nepal believe that tens of thousands of women across the world have leprosy but have not been diagnosed and are therefore not receiving treatment. They also believe that this is not inevitable and have been conducting research in an attempt to find a solution.
There are a number of reasons that women are less likely to be able to access medical care.
One significant issue is that women in leprosy endemic countries like Bangladesh and Nepal often require permission from either their parents or their partner before they can travel to a health centre. If the trip to the centre is a long one, that might require time away from the home and income-generating activities, as well as money for travel. Women are often not in a position to make that decision for themselves.
Beyond this, there are a number of other challenges that disincentive women from seeking help.
For example, a lot of the doctors are men, and women are reluctant to go to them for help. Further to this, if they were to tell their husbands that they have been diagnosed with leprosy, there is a realistic fear that their husbands could leave them and this would make them destitute.
Photo credit: Rabik Upadhayay
Another cultural challenge in Nepal and Bangladesh is that men are not allowed to enter another person’s home without special permission. If your case finding teams are staffed by men, it is often a challenge for them to visit homes if there are only women present and no man to invite them inside.
All of these cultural and social factors were known to our teams as they began working to address this problem. However, the goal for their research was to dig beyond these well-known cultural challenges to learn from women what other factors are at play and how these could be overcome.
This research project happened through a number of existing TLM projects in Bangladesh and Nepal. The teams took the data from these projects and sought to find solutions in a process of testing and verification.
Through their experience with these projects, they knew that women were likely to be under-represented. They took their knowledge of existing cultural norms and then went further, to determine whether there were other barriers to women’s access to healthcare.
This work revealed that there were a number of practical challenges that needed to be overcome. Women in Bangladesh and Nepal often have quite demanding schedules that require them to look after the home and family, fetch water, and farm. If contact tracing teams are visiting communities when women are busy and away from the home, there is a risk that many cases of leprosy will be missed.
A further discovery was that the location of skin camps could play a part. If our skin camps took place in places that women were unwilling to visit, they would naturally stay away. Further to this, if our awareness materials were not appealing to women, women were not likely to engage with them.
Photo credit: Fabeha Monir
Through a process of testing, the teams have developed a number of solutions that have proven to be effective.
1.Working in partnership with local organisations that are already working with local women and trusted by them
In Bangladesh one approach that has been successful is partnering with organisations that run thousands of women’s self-help groups. This means their members can be screened and made aware of leprosy and in addition their staff are able and skilled to reach out to many more women. These organisations include those focusing on women’s empowerment and on stopping domestic violence.
2. Training female health workers and volunteers
If women are reluctant to talk to male healthcare workers and if men find it hard to access homes when they are on community visits, one solution is to train more women to do this work.
Our teams in Bangladesh and Nepal trained female healthcare workers in how to prevent and detect leprosy, as well as teaching them to instruct on basic self-care, the importance of treatment, and how to refer individuals for further treatment.
These trainees have included existing health staff who primarily focus on infant and maternal health, volunteers from within communities, and new members of our team.
We have seen that women are more likely to talk to other women and that our female colleagues have found it far easier to enter homes during our community visits.
3. Bringing treatment to women
If a further challenge for women is the difficulties they face in travelling, our teams reasoned that more should be done to bring treatment and care direct to women.
Women are not only under-represented in the number of new cases, they are also under-represented in the number of individuals who undergo reconstructive surgery. When you speak to women about this, you learn that this is because of the challenges surrounding travel, but also the challenge of being away from home – and your dependents – for long periods.
In Nepal, our team experimented with bringing reconstructive surgeries direct to the communities. This was a logistical challenge and it was expensive, but the outcome was that more women were able to undergo reconstructive surgery. While in Bangladesh the team trained sub-district Government Hospitals and mission hospitals in complication management. These services are much closer to those in need of treatment and enable women to more easily access treatment as well as better combine with other responsibilities as much less time is expended.
4. Reaching women when they are available
Because women in Bangladesh and Nepal have challenging and complex schedules, it was important to speak to them about when they are available to attend a skin camp or to receive a visit from a contact tracing team.
These activities should not happen when they are convenient for medical teams; they should happen when women – and other community members – are available.
Photo credit: Ruth Towell
5. Include men in the process
Many of the social challenges that women face in accessing healthcare are because of cultural norms that are primarily perpetuated by men. It is only by addressing those cultural norms with men that we can create greater freedom for women so that they are better able to seek healthcare.
Our teams worked on awareness campaigns with men on these issues and they saw some attitudes begin to change.
In a further attempt to change attitudes, the teams reassessed their awareness materials. In any illustrations or case studies, they aimed to show men and women in non-traditional roles. It is a small change, but it starts to embed the idea that women can move beyond their traditional place in their communities.
6. Assess your work carefully
Throughout this process, our teams worked hard to speak to women in communities to learn from them. They looked at the design of their projects and reassessed them with a gender lens. They examined each activity, asking whether it was really inclusive.
As their interventions were implemented, they looked closely at the new data they were receiving to see if things were changing. If they were not meeting their goals, they would re-evaluate.
This process of innovation and learning has demonstrated that our teams were right. It is not inevitable that women are under-represented in leprosy case detection.
Whilst the global average has women representing 39 percent of the global leprosy caseload, these gender-focused programmes saw something different. Between 51 and 55 percent of new cases found in these projects were women.
The work to reach the missing women is not straight forward and can prove time and cost intensive, but the women we are missing are owed that effort.
We hope that the knowledge gained from this research will be a helpful guide for teams across the world.
We also hope that more research on this issue is undertaken in the years to come, as there is still much to be learnt if we want to close the gender gap.
Cover photo credit: Fabeha Monir
