The Perception of Leprosy Stigma: Societal Factors, Resistance and Resilience in People Affected by Leprosy in Northern Mozambique

Leprosy is a neglected tropical disease (NTD) also known as Hansen's disease (HD). It is a mildly infectious disease caused by a bacillus called Mycobacterium leprae. Since the introduction of multidrug therapy (MDT) in 1982, the management of leprosy has advanced significantly, offering a cure to millions of people. Elimination of leprosy as public health problem was achieved globally in 2000 . However, in 2018, according to WHO official figures, 208 619 (WHO, 2019) new leprosy cases have been registered globally. Based on 184 212 cases registered for treatment at the end of 2018 (WHO, 2019), prevalence rate corresponds to 0.2/10 000, nevertheless this rate can be much higher in endemic districts. For example higher burden countries such as India and Indonesia have a prevalence rate of 0.6, in Brazil is 1.4 (WHO, 2019). The primary focus of national leprosy control services is disease surveillance and medical treatment. However, numerous studies (Rafferty, 2005; Litt, 2012) suggest that the wellbeing consequences of the disease can be more significant than the physical and functional dimensions. Sometimes the mental wellbeing is affected with depression and even suicide (Cross 2006). A wellbeing distress is leprosy-related stigma and discrimination, influencing societal and cultural norms, behaviours and attitudes.
This research will explore systemic factors and structural processes underlying stigma. The focus will be on people affected by leprosy and those who acquired a disability due to the disease . Furthermore, I will investigate on the ability of people affected to resist stigma, defining actual resistance as "the willingness to resist derogation and discrimination by other people"(Thoits, 2011). I will explore stigma resistance of people affected by leprosy considering everyday practices, strategies and abilities to overcome stigma at personal, peer and community levels. Additionally, I will investigate how stigma resistance can impact individual and family resilience, as a process by which individuals and families withstand adversities (Walsh, 2003) or manage significant sources of stress or trauma (Windle, 2011), such as stigma.
The explorations mentioned above are motivated by the following considerations. On the one hand, studies on leprosy-related stigma and discrimination largely focused on the stigmatised person, the stigmatising context and the broader systems. On the other hand, there is a paucity of studies on leprosy stigma resistance, which could evaluate the agency of people affected to fight the stigma. While agency and resistance are prominent themes in research on other oppressed groups, the stigma literature has tended to portray disabled people through a "tragic lives" paradigm (Oliver, 1990; Scambler, 2009). A qualitative investigation of stigma resistance from the perspective of people with lived experience pointed to stigma resistance being an active process of using one's skills and experiences to fight stigma at the personal, peer, and public levels (Frederick, 2017). Hence, stigma resistance could also be interconnected to resilience and increase of self-esteem.