Education in schools to improve early leprosy detection in Timor-Leste

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Friday, 7 December 2018

Katherine Fowden is an Australian PhD student and Occupational Therapist with a Master's Degree in Public Health. 

During the week beginning 8 October 2018, I embarked on a study visit to Timor-Leste using grant funding received from the Robert Cochrane Fund for Leprosy, awarded by the Royal Society of Tropical Medicine and Hygiene.

The purpose of this trip was to visit a range of Timor-Leste leprosy-related organisations and other key stakeholders, to inform and effectively tailor the development of a school-based leprosy screening and education programme kit as part of my PhD studies.


A typical scene in Timor-Leste © Katherine Fowden

I have had experience working in Timor-Leste in the field of disability employment services, and through this experience, have had some (albeit limited) exposure to patients with leprosy.

I decided to undertake a PhD focusing on early leprosy case detection, following a year living, and working, in the geographically-isolated Oecusse enclave of Timor-Leste.

Despite leprosy being technically ‘eliminated’ (i.e. reaching the threshold of <1 case per 10,000 population) at a national level in 2010, the condition remains endemic in some ‘pockets’ and municipalities of Timor-Leste. 

The Oecusse enclave is one of these remaining endemic areas. Here, rates of leprosy are estimated at 5 cases per 10,000 (WHO, 2018). 

What does the project involve?

As part of my PhD, I have so far completed and published a global systematic review into school screening for leprosy. I have also carried out interviews with both health practitioners and school staff in Timor-Leste. The results of these are being written up for publication.

The next phase of my research project aims to identify early cases of leprosy through the design, development, pilot and evaluation of a culturally appropriate school-based leprosy and ‘skin health’ education and screening programme for Timorese schools.

The programme is targeted at secondary school students. It aims to increase leprosy symptom awareness and ultimately facilitate early access to treatment. The programme will be developed based on information from the global systematic review, as well as location-specific information obtained through the completed interviews.

The Timor-Leste Leprosy Mission

During my recent study visit to Timor-Leste, I was fortunate enough to have the opportunity to spend time with the Timor-Leste Leprosy Mission (TLLM) in both Dili and Oecusse districts. Through these visits, I was able to learn about the services they offer, their coverage across Timor-Leste and the country’s leprosy statistics and leprosy profile.

The TLLM have previously run screening programmes in schools. They were able to offer some excellent advice based on their experiences, to ensure maximum success of the programme. They were also eager to be involved in the development and facilitation of the school-based leprosy education programme.

It was fantastic to hear about the great work of the TLLM, and I am happy that I was able to learn from their extensive experience. I really look forward to working together with them during the next phase of my PhD project.

Share International

The second day of my visit was spent visiting Share International and a dermatologist at Dili Hospital. 

Share International have carried out extensive work with the Ministry of Education on school health education, across Timor-Leste. This included their school health promotion programme, in which I was able to view the school health resources they had developed.

They also aided me with logistical issues such as printing and culturally-appropriate design of material. I then discussed ideas for my project, and how best to integrate them into Timor-Leste’s school health programme to ensure sustainability.

Dilli Hospital

My visit to a Timorese dermatologist at the Dili Hospital provided me some more education about the identification of early leprosy, as well as invaluable information regarding the most common skin infections seen in Timor-Leste students.

Ideas from the perspective of a dermatologist were invaluable regarding the key promotional messages to use, to improve early case detection of leprosy.

The Timorese Dermatologist, together with the TLLM, have recently produced a national programme. This programme was designed to educate health workers about the early case detection of leprosy across the nation. Like the TLLM, the dermatologist is also very keen to be involved in my project – I am really excited to be able to draw on her expertise from both a clinical and cultural perspective.

The World Health Organization in Timor-Leste

Day 3 of my visit to Timor-Leste was spent with the World Health Organization (WHO). I also visited the School Health Focal Point in the Ministry of Health.

The meeting with WHO was extremely valuable in exploring how the proposed programme contributed to current projects and national health priorities for Timor-Leste, as well as how it can be integrated into existing/proposed programmes. The WHO, too, were very interested to be involved in the project. They shared ideas around programme development, consultation mechanisms and resources.

The visit to the School Health Focal Point in the Timorese Ministry of Health assisted me further in being able to contextualise my proposed programme. From this visit, I am now aware of the health education topics delivered in the current school curriculum.

In the Oecusse enclave

Day 4 and 5 of my visit were spent in the Oecusse enclave of Timor-Leste.

During my time in Oecusse, I was supported by the TLLM, and I was able to meet with the Ministry of Health and Education regarding my programme. Oecusse is planned to be one of the main project sites for the pilot of the programme, so establishing these networks and relationships are of extreme importance.

I was also fortunate enough to be able to visit local schools in Oecusse. I spoke with a number of school principals and teaching staff about their perceptions of school health programmes. Obtaining information and insights from this information-rich cohort will further assist me in ensuring that my education programme is relevant, culturally appropriate and able to be integrated easily into the school curriculum. 

The school staff I spoke with were also very passionate about improving the health of students and were very happy to be involved in supporting the programme.

Reflections on this study visit

This trip will most certainly assist me in informing, effectively tailoring and targeting the development of the school-based leprosy education programme as part of my PhD.

I am very fortunate to have had the experience to learn from the perspectives and experiences of in-country subject matter experts. The study visit has also further developed and built on my relationships with these valuable contacts.

I sincerely hope that my research is able to be of some benefit toward the elimination of leprosy across the whole of Timor-Leste. 

Thank you again to the Royal Society of Tropical Medicine and Hygiene for giving me this opportunity.

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