This study will address the following question: What are the perspectives of persons affected by leprosy, their families and healthcare providers on living with chronic aspects of leprosy, to formulate a guideline that can address care after multi-drug treatment?
Addressing healing after multi-drug treatment centred around perspectives of persons affected by leprosy, their families and healthcare providers: a qualitative study
Project coordination
Project summary
Leprosy is an illness with chronic implications, having multidimensional impacts on the patient’s life. Persons affected by leprosy continue to face challenges beyond the completion of Multi Drug Therapy (MDT), as the consequences of nerve damage are lasting, requiring lifelong care. Despite being declared cured medically at the end of their MDT treatment, persons affected by leprosy with impairments themselves feel that they are not cured because they still suffer from persisting symptoms. They continue to endure lingering disabilities, other related difficulties, and stigma. The current model of care does not acknowledge or address the chronic nature of leprosy and the needs of persons affected who are released from treatment (RFT). They continue to struggle with the physical and psychosocial consequences of leprosy without any systematic support from healthcare providers. Though there are few studies that quantify the disabilities faced post-RFT, there are no standard guidelines or holistic care models addressing the needs of persons affected by leprosy to help them on their recovery journey.
This study attempts to understand the perspectives of care after cure in leprosy from the point of view of both patients, the family members and healthcare providers through interviews. Through a literature review, this study will draw lessons from other illnesses like diabetes, tuberculosis, HIV/AIDS and schizophrenia which are similar to leprosy in terms of chronicity, to look beyond the concept of cure, and to identify measures to promote healing. Based on the learnings from the literature and perspectives of the stakeholders, we will attempt to develop a set of guidelines that will help inform care of the chronic aspects of leprosy. The researchers propose that the adoption of the concept of healing will add a new dimension to leprosy care and if incorporated into practice, it would empower people with leprosy to live meaningful lives, even with persisting symptoms.