Title : To understand and address the complex issues faced by individuals with leprosy (Hansen’s Disease) in Malaysia: A transdisciplinary research approach
Introduction: Leprosy, or Hansen's disease, is a chronic infectious disease caused by a bacillus, Mycobacterium leprae. The infection has a long incubation period, primarily affecting the skin, mucous membranes, and peripheral nerves. Leprosy is curable with multidrug therapy, but it was once a significant public health problem in Malaysia. In 2021, there were 142 new cases of leprosy, and although the numbers are low, they indicate ongoing transmission. The disease disproportionately affects marginalised and vulnerable populations, such as indigenous people, in hard-to-reach areas. Leprosy has a multi-domain effect on leprosy-affected people, and they are affected by stigma and discrimination. Effective interventions and policies are needed to address the complex issues faced by these individuals.
Methods: This research used a transdisciplinary research (TDR) approach to understanding the complex problems faced by individuals with leprosy in Malaysia. Stakeholder identification and mapping were conducted to identify the leprosy-affected individuals and the key people and decision-makers from governmental agencies like the Ministry of Health, Welfare Department, Department of Orang Asli Development, and non-governmental organisations (NGOs) like MaLRA, and community members involved in their care. Participants were purposively sampled, and there were a total of twenty patients from Kelantan, Pahang, and Selangor and twenty stakeholders from the government, NGOs, and community. Semi-structured interviews were carried out, and their responses were transcribed and analyzed with NVIVO software.
Results: The four main themes that emerged regarding the impact of leprosy on individuals were biophysical, psychological, social, and economic. The stakeholders’ analysis showed that the main challenges were a lack of public awareness and knowledge of leprosy, insufficient resources for prevention and control, lack of some competencies by some of the frontline healthcare professionals, and access to health and social services. Another area was access to employment and skills training for self-sufficiency. Details of the analysis and proposed strategies to overcome these challenges will be presented. Some of the strategies generated for the complex problems of leprosy included:
- Providing medical care and treatment,
- Raising awareness and promoting education - patients, community, and healthcare workers,
- Supporting patient education and empowerment,
- Developing and implementing policies incorporating these co-created strategies,
- Integrating healthcare and social services,
- Working on research and development using this TDR approach.
Conclusion: This collaborative work ensures that the solutions proposed are empowering, practical, feasible, and sustainable and have buy-in from all relevant parties. This approach will enable the research to have a greater impact and contribute to real-world change for individuals affected by leprosy and other chronic diseases in Malaysia.
audience take away:
- They will be able to use this methodology to understand the problems faced by patients with chronic diseases in the real world.
- They can use the results to help patients articulate their symptoms into problems so that they can provide targeted solutions.
- The methodology described could easily be translated into other healthcare-related research and be a model to teach others in this research paradigm.
- Yes, this research describes how to identify problems related to chronic diseases and generate solutions using a participatory approach
- It provides a different framework, engaging different stakeholders to learn from each other to generate solutions to help the patients
- This paper provides the iterative process for conducting transdisciplinary research using leprosy in Malaysia as a case study.