Experience of people living with leprosy at leprosy settlements in Nigeria

Abstract

Background

Although Nigeria achieved the national leprosy elimination target of less than 1/10,000 population in 1998, factors such as culture, behavioural patterns and social determinants, among others, continue to contribute to an increase in leprosy cases and a poor state of living for individuals with leprosy in Nigeria. This study delves into the experiences of individuals residing in leprosy settlements in Nigeria.

Methods

This study employed a community‐based cross‐sectional design, utilizing a concurrent mixed‐methods approach for comprehensive data collection. Questionnaires, focus groups and interviews are conducted simultaneously. The research involves participants from seven leprosy communities across Nigeria's six geopolitical zones and Federal Capital Territory. Qualitative methods, including 14 focus group discussions and 6 key informant interviews, are complemented by quantitative questionnaires, engaging residents, leaders and nongovernmental organization (NGO) representatives. Respondents comprised 35 leprosy patients, 21 family members, 7 community leaders, 7 settlement officers and 2 organizational heads involved in leprosy control.

Results

The results indicate significant access to healthcare (93.7%) and interest in self‐care practices (95.2%), with a considerable proportion (74.6%) receiving free healthcare. Interview data underscore the limited government support, with NGOs and partners assuming a more substantial role. Qualitative insights from persons living with leprosy highlight financial struggles, stigmatization and substandard living conditions in settlements, exacerbated by limited government funding. This reliance on private and NGOs is further compounded by declining funding, hindering individuals’ ability to start businesses and provide self‐care.

Conclusion

This study underscores the pressing need for increased government support, funding and better living conditions for individuals affected by leprosy in Nigeria. It highlights the significance of education, awareness campaigns and human rights promotion to combat stigma and enhance the quality of life for those living with leprosy. Moreover, the study advocates for the reintegration of affected individuals into their communities to foster societal inclusion and well‐being.