Engagement strategies for people living with leprosy: a scoping review of studies published from 1992 to 2024.

Background

Leprosy is an infectious disease that can cause permanent deformities if untreated. Stigmatization contributes to treatment abandonment and social exclusion. Engaging patients and families may improve health outcomes. This scoping review mapped studies on engagement strategies for people with leprosy.

Methods

Database searches were conducted up to February 2025, including original studies that addressed engagement strategies for individuals with leprosy, as well as their families and communities. Terms related to “leprosy” and “health behavior” guided the search in EMBASE, Scopus, BVS/Lilacs, Medline/PubMed, and Web of Science. Independent selection and data extraction were conducted and strategies synthesized using the adapted 6W4H tool. They were classified into five engagement levels: Inform about health, Inform about engagement, Empower, Partner and Integrate.

Results

Eighteen studies published between 1992 and 2024 were included. The identified strategies consisted prevention of disability (POD) interventions (n = 3; 16.67%), mobile applications for health education and leprosy case detection (n = 2; 11.11%), self-help groups (SHG) (n = 2; 11.11%), self-care group (SCG)(n = 1; 5.76%), community project to improve attitudes towards leprosy (n = 1; 5.76%), lesson plans for health education on leprosy (n = 1; 5.76%), community project to reduce stigma related to leprosy (n = 1; 5.76%), face-to-face meetings between people with leprosy and the general public (n = 1; 5.76%), text messages for monitoring pharmacological treatment of leprosy patients (n = 1; 5.76%), self-care education program (n = 1; 5.76%), educational podcast (n = 1; 5.76%), training for healthcare professionals and community health agents (n = 2; 11.11%), and education on self-examination and fictional television works (n = 1; 5.76%). The main objectives were health education (n = 5; 27.78%) and deformity prevention (n = 6; 33.33%). Most strategies were led by healthcare professionals (n = 10; 55.56%) and targeted individuals affected by leprosy (n = 12; 66.67%). The most common level of engagement was Empower (n = 8; 44.44%) and none were identified as reaching Partner or Integrate levels, highlighting an important gap in strategies that promote deeper forms of engagement.

Conclusions

The review highlights several engagement strategies, especially those enabling the levels Inform about Health and Empower. However, literature lacks strategies promoting deeper engagement, such as Partner and Integrate, highlighting the need for new approaches.