Participation of people with disabilities due to Leprosy, Lymphatic Filariasis (LF), and other causes in Uganda

Leprosy and lymphatic filariasis (LF) not only cause disfigurement and disability but also create social stigma hindering participation and inclusion of affected individuals. This is largely attributed to the limited knowledge and information about these conditions which contributes to misconceptions, exacerbating the stigma. This research project conducted in 2018–2019 investigated the participation of people with disabilities due to leprosy, LF, and other causes.

A mixed-methods approach was applied, using the participation scale (v6.0), focus group discussions, observation, and semi-structured interviews to attain comprehensive conclusions on the various aspects of the study.

Although the higher percentage perceive their disability to be moderate, 19.8% perceive their disability to be severe. A majority (59.4%) of the people affected by leprosy reported the need for protective footwear and other assistive devices. Although 26.5% experienced no participation restrictions at individual, family or community level, 24.8% experienced severe restrictions and 17% extreme participation restrictions. The study revealed that education played a pivotal role in mitigating participation restrictions across all categories. Those with higher education levels reported fewer restrictions, highlighting the need for targeted interventions to address educational disparities. 42.9% of persons with disabilities with vocational/tertiary education indicated no participation restrictions while 37.3% of people affected by leprosy with no education reported severe participation restrictions. The assessment also explored various aspects of participation, including equal opportunities and responsibilities, social interaction and confidence, and personal wellbeing and health. Disparities were observed, with individuals affected by LF exhibiting higher levels of social interaction and confidence compared to those affected by leprosy and other disabilities.

Knowledge and information, attitude, hygiene and lack of funds are key determinants of participation and inclusion of people affected by leprosy, LF, and disability due to other causes, while lack of information restricts effective planning for their inclusion. Improving self-care practices, providing knowledge and information on these conditions, and promoting equal access to resources and opportunities were identified is vital in enhancing participation and inclusion of the people affected by leprosy, LF and other disabilities. Accurate documentation, community-based rehabilitation, equal access to assistive devices, and advocacy efforts to combat stigma and promote understanding, are recommended to enhance participation and inclusion.