A pilot study using participatory, translational, social science research methods to explore stakeholder perspectives on preventing delayed diagnosis in leprosy

Objectives: This study sought to enhance and complement existing knowledge on preventing delay in diagnosis of leprosy, through the application of inclusive research methods which incorporate perspectives of multiple stakeholders. Study Design: An innovative, sequential, qualitative and participatory method was used comprising interviews with people affected by leprosy, reflection and discussion groups with multiple community level stakeholders and research translation meetings with management level staff of a major NGO and the relevant state government department. Results: Enhancing the skills and roles of people affected, lay people and grassroots community workers was identified as a foundational strategy. Targeted and active case finding approaches are required. A broad-scale dissemination approach to public education and awareness on leprosy is also recommended, using ubiquitous and high profile media. Intervention planners must ensure alignment between general aspirations or goals, and more practical and specific strategies. Conclusion: The current findings align well with the Behaviour Change Wheel, and provide a worthwhile framework to guide multifaceted and holistic service development to address delayed diagnosis.