Co-developing strategies for leprosy management in Malaysia: A transdisciplinary research approach involving individuals affected by leprosy and other stakeholders

Despite Malaysia's low leprosy prevalence, new cases continue to emerge in rural and Indigenous communities. National strategies often prioritise elimination and surveillance, while overlooking the needs and challenges of individuals affected by leprosy and those managing their care. This study employed a transdisciplinary research approach, guided by the Dialogue Model, to co-develop context-specific strategies to improve the lives of those affected through participatory engagement with both groups. Conducted across three high-burden states in Peninsular Malaysia, the research involved a desk review and stakeholder mapping, followed by 40 in-depth interviews with affected individuals and other stakeholders. These were complemented by a stakeholder workshop, a focus group discussion, and an evaluation of implemented strategies. Participants identified overlapping and divergent concerns, including stigma, financial hardship, access barriers, interagency coordination, and awareness gaps. These findings informed the co-development of locally grounded strategies, some of which have since been trialled at the community level. While not primarily intended to influence national policy, the study generated actionable strategies to improve leprosy care delivery in underserved settings. This approach demonstrates how transdisciplinary methods can help align community experiences with service provision in neglected tropical disease programmes, particularly in low-endemic contexts, and contribute to more equitable global health systems.

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Publication Details

Journal
Global Public Health
Published
2025-12-11
DOI
https://doi.org/10.1080/17441692.2025.2598721
Primary Topic
Leprosy Research and Treatment
Type
article
Field-Weighted Citation Impact
0.00
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article

Co-developing strategies for leprosy management in Malaysia: A transdisciplinary research approach involving individuals affected by leprosy and other stakeholders

Marjolein Zweekhorst, Ruth M. H. Peters, Norana Abdul Rahman, Mohammad Abdullah et al.
Global Public Health
Leprosy Research and Treatment
article

Co-developing strategies for leprosy management in Malaysia: A transdisciplinary research approach involving individuals affected by leprosy and other stakeholders

Marjolein Zweekhorst, Ruth M. H. Peters, Norana Abdul Rahman, Mohammad Abdullah, Vaikunthan Rajaratnam, Karen Morgan, Pamela Wright
article en

Abstract

Despite Malaysia's low leprosy prevalence, new cases continue to emerge in rural and Indigenous communities. National strategies often prioritise elimination and surveillance, while overlooking the needs and challenges of individuals affected by leprosy and those managing their care. This study employed a transdisciplinary research approach, guided by the Dialogue Model, to co-develop context-specific strategies to improve the lives of those affected through participatory engagement with both groups. Conducted across three high-burden states in Peninsular Malaysia, the research involved a desk review and stakeholder mapping, followed by 40 in-depth interviews with affected individuals and other stakeholders. These were complemented by a stakeholder workshop, a focus group discussion, and an evaluation of implemented strategies. Participants identified overlapping and divergent concerns, including stigma, financial hardship, access barriers, interagency coordination, and awareness gaps. These findings informed the co-development of locally grounded strategies, some of which have since been trialled at the community level. While not primarily intended to influence national policy, the study generated actionable strategies to improve leprosy care delivery in underserved settings. This approach demonstrates how transdisciplinary methods can help align community experiences with service provision in neglected tropical disease programmes, particularly in low-endemic contexts, and contribute to more equitable global health systems.

Global Public HealthVol. 20(1)
RCSI & UCD Malaysia Campus (MY), Universiti Sains Malaysia (MY), Khoo Teck Puat Hospital (SG), Athena Sustainable Materials Institute (CA), Perdana University (MY), Vrije Universiteit Amsterdam (NL)
Openalex Percentile: Top 53%
Leprosy Research and Treatment
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