Projects

Burden of treatment for people with leprosy

  • Grant: LRI Regular Grant
  • Research priorities: Disability
  • Country: Myanmar
  • Project no.: 704.16.16
  • Budget: € 24,270
  • Duration: February 2016 - February 2017
  • Status: Completed

Full project title:
A case exploration in Myanmar to document issues and provide a foundation for future scale development

Project coordination
Menzies Health Institute of Queensland, Griffith University (Australia) BurdenOfTreatment1

Partners
The Leprosy Mission Myanmar

Aim: The research group conducted an in-depth exploration of  "burden of treatment" in leprosy within Myanmar as a case example. 

Final project summary
The treatment of leprosy has many dimensions which place multiple demands on people affected by leprosy and their families. These demands include taking medications regularly, managing wounds, monitoring reactions, co-ordinating care, scheduling and attending appointments. They are all parts of the “workload” of treatment that people with leprosy are required to fulfil. They are aspects of the “burden of treatment” they have to deal with. This burden is often amplified for people in remote or poor areas due to travel costs, struggling health systems and lack of specialists.

These burdens can result in people becoming overwhelmed and not following treatment guidelines or opting out of treatment altogether with all its related negative effects.

This project has explored this issue from the perspective of people with leprosy across Myanmar. The study included the views of a variety of people who had (or were undergoing) leprosy treatment on their experiences of treatment and services and the other aspects of life that are affected or influenced by their treatment. This was done in 23 focus groupls, led by specifically trained people affected by leprosy together with services staff.

The findings made clear that the burden related to leprosy treatment is both complex and substantial. Key examples of the findings included financial issues, constraints on livelihood, the psychological impact of skin discoloration after the treatment, as well as feelings of insecurity about being released from treatment and a lack of confidence about their status after treatment. The latter were often related to the burden of insecurity and fear related to common myths about leprosy treatment. The findings from this study will form the basis for a scale on burden of disease in leprosy, and will be important for understanding and assessing barriers to treatment completion. 

Impact

Presentations:
- Pim Kuipers, Zaw Moe Aung, Lin Thet, and Roe Nwe Wai. Burden of treatment: A factor in leprosy-related disability and reactions?
   Presentation at the International Leprosy Congress, Beijing, 2016.
- Zaw Moe Aung, Lin Thet, Roe Nwe Wai, Pim Kuipers.  Burden of treatment in leprosy  Presentation at the LRI Spring Meeting,
   Veenendaal, Netherlands, 2017.
- Roe Nwe Wai, Pim Kuipers, Zaw Moe Aung, Lin Thet. Burden of treatment in leprosy: Project outcomes.  Presentation at the LRI Spring Meeting, Veenendaal, Netherlands, 2018.