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

ABSTRACT Background Neglected tropical diseases (NTDs) often affect the most impoverished people in society. Uganda continues to carry a heavy burden of leprosy and lymphatic filariasis (LF). Both NTDs cause disfigurement and disability, often impacting the participation and inclusion of the affected persons. Their exclusion largely arises from the stigmatizing nature of both conditions and the limited knowledge and information. This research project conducted in 2018 investigated the participation of people with disabilities due to leprosy, LF, and other causes to inform appropriate intervention. Methods A mixed-method approach including quantitative and qualitative methods was applied. A variety of data collection methods such as Participation scale (v6.0), focus group discussions, observation, and semi-structured interviews were used to achieve comprehensive conclusions on the various aspects of participation and inclusion of people with disabilities arising from leprosy, LF, and due to other causes. Results Many people with disabilities due to leprosy and LF realize that they are affected by the disease only when it has advanced and they have developed visible disabilities. This is largely attributed to a lack of knowledge and information about the two diseases. About 27% reported no participation restriction, 25% reported severe, and 17% extreme participation restriction. Among people with disabilities due to LF a higher percentage reported no restriction, while higher percentages of respondents with disabilities due to leprosy and other causes reported severe and extreme restrictions. Participation restriction is experienced more by the female population. Conclusion Although there is a general lack of data on disability experienced by people affected by leprosy and LF, a significant percentage (42.1%) experienced participation restriction. Disability due to leprosy and other causes is more likely to cause participation restriction than disability attributed to LF. Adequate knowledge and information, accessibility, acceptability, and affordability of services are key enablers of participation while their lack hinders participation and inclusion. Author Summary Disability is estimated at 15% of an average population (WHO 2011). Disability inclusion is prioritized on the development agenda. It is explicitly mentioned in six out of the 17 goals (UN 2015). Leprosy and lymphatic filariasis are neglected tropical diseases that disfigure and affected persons and cause disability however, not much is documented on their participation in community development. This study was implemented in 2018 to establish the nature and level of participation as well as a foundation upon which stigmatized people such as those affected by Leprosy, LF and disabilities due to other can be assured of participation and inclusion in community development programs. This mixed method study was implemented in five districts of Northern Uganda. Documents review, a participation scale, focus group discussions and semi-structured interviews were used to collect data. This study revealed that due to lack of knowledge and information, many realize that they have leprosy and lymphatic filariasis when they have developed visible disabilities. It also revealed that people affected by leprosy, LF and PWDs access and benefit from health care services but are excluded from most mainstream community development programs. However, people affected by leprosy, people with disabilities due to other causes and the female with lymphedema reported more participation restriction than male with lymphatic filariasis. The key determinants of participation in community development are attitude, distance, funds, knowledge and information.