Lessons From the Past, Hope for the Future: A Qualitative Study on the Lives of Leprosy-Affected Residents of a Leprosy Settlement in Malaysia

The Sungai Buloh Leprosarium in Malaysia, established in 1930, provided relief for many individuals with leprosy, yet their personal narratives remain largely untold. This study explored the lived experiences of older individuals affected by leprosy at the Leprosarium, focusing on their concerns, needs, and challenges. By examining the historical context and key themes from interviews with leprosy-affected participants, the study aimed to enhance their well-being and provide insights applicable to leprosy-affected individuals in the community, other leprosaria, and older individuals in institutional care settings. The participants comprised eight women and ten men, aged 41-84 years, with a mean age of 73.7 years. These participants, selected via purposive and snowball sampling, were interviewed for 40-45 minutes over two sessions to allow rest breaks. The interviews were transcribed, validated, and analyzed using NVivo 14 software through an inductive-deductive thematic approach. Results showed hope is a transformative coping strategy, emerging as the overarching theme, guiding participants through the challenges of leprosy. Other themes included navigating the bio-psychosocial challenges of leprosy, life within the leprosarium, practical coping strategies in daily life, parental separation from infants at birth and its emotional toll, and expressing gratitude for the opportunities and care provided by the leprosarium. These themes demonstrated how hope shaped participants' resilience and resourcefulness, enabling them to positively reframe their experiences. This study emphasized the role of hope and the importance of support systems in fostering resilience and improving the quality of life of individuals with leprosy and older adults in institutional care settings.