Voices from a Leprosy Settlement: A Qualitative Study

Introduction: The Sungai Buloh Leprosarium in Malaysia, established in 1930, and known as the Valley of Hope, stands as a beacon for those struggling with leprosy. More than a research and treatment centre, the Leprosarium became a place where individuals dared to hope for a cure, replacing fear and stigma with solace through treatment, care, and understanding.
Objectives: This research explored the lived experiences of leprosy-affected residents at Sungai Buloh Leprosarium, focusing on their concerns, needs, and challenges. As part of a larger initiative across three study locations in Peninsular Malaysia, the objective was to comprehensively understand the experiences of individuals affected by leprosy and their caregivers. The study strived for a transformative impact on their lives, fostering mutual understanding and collaborative solutions to enhance the quality of life of those affected and their communities.
Methods: Qualitative research employed in-depth interviews with 18 purposively selected residents, transcribed and analysed using NVivo 14 software. A deductive thematic analysis approach, informed by predetermined categories and themes from a systematic review, was applied.
Results: The 18 residents, aged 60-84 years, have lived at the leprosarium for over five decades. They experienced diverse impacts of leprosy: physical, social, psychological, employment, and economic well-being. Despite challenges, gratitude prevailed for treatment, benefits, and a safe living environment. Empowered by an NGO's creative art classes, residents contributed proceeds from the sale of their artworks to their community, supporting the local hospice. Aspiring to recognise Sungai Buloh Leprosarium as a National Heritage site, they envisioned its role as a valuable educational resource.
Conclusion: Sungai Buloh Leprosarium testifies to the resilience of individuals affected by leprosy, emphasising they can lead normal lives and contribute to society when given opportunities. The study emphasises the necessity for a multisectoral approach to combat leprosy-associated stigma and improve their overall quality of life.