Voices from the margins: A qualitative study on the lived experiences of leprosy-affected individuals from two diverse rural communities in Malaysia

Leprosy, or Hansen's disease, a chronic infectious disease caused by Mycobacterium leprae, can result in irreversible nerve damage and physical deformities if untreated. It affects socioeconomically disadvantaged groups, causing financial hardship through persistent symptoms, treatment-related travel expenses, and limited ability to work. These burdens are compounded by stigma, discrimination, and psychosocial distress. This qualitative study examined the lived experiences of individuals affected by leprosy in two rural communities in Malaysia: the Indigenous Orang Asli (Jakun) in Pahang and ethnic Malays in Kelantan. The aim was to understand their needs, concerns, and challenges to inform strategies that enhance their well-being. In-depth, face-to-face interviews were conducted in Malay with 32 individuals purposively selected with assistance from the State Health Departments. The researcher summarised key points at the end of each session to confirm participants' intended meaning. Interviews were transcribed, translated into English, and, where possible, verified by participants. Data were thematically analysed using NVivo 12. Five themes emerged: knowledge and awareness, social impact, psycho-affective challenges, access to health services, and employment and economic sustenance. Awareness was limited in both groups, particularly among the Orang Asli, due to language barriers and cultural beliefs. While Malay participants had better access to health services, stigma remained pervasive. The Orang Asli faced more severe economic challenges and deeper social marginalisation. These findings highlight the need for culturally tailored strategies, including health education, psychosocial support, and livelihood assistance, to reduce stigma, improve access to care, and promote the overall well-being of affected individuals in rural community contexts.