Project coordination
Vrije Universiteit Amsterdam
Partners
Universitas Indonesia
New York University
NLR Nepal
Aim: This study addresses how the influence of culture on stigma can be taken on board in (generic) approaches to improve assessments and approaches to reduce stigma-related to leprosy, LF and depressive disorders in Indonesia, Nigeria and Nepal.
Full project title:
Capturing culture-specific stigma dynamics by understanding ‘What matters most’ to inform (generic) measures to assess and approaches to reduce stigma: a three country study
Project summary
People with leprosy not only have to deal with the illness, but also with negative attitudes and behaviours from others. Leprosy is often seen as the archetype of a stigmatized condition, but stigma plays in a range in conditions. One of these conditions is lymphatic filariasis (also known as elephantiasis). Lymphatic filariasis is a disease caused by parasitic worms that are spread by mosquitos. Most cases are symptomless, but damage to the lymph system can cause severe swelling in the legs, arms, and genitalia. Another group of stigmatized condition are depressive disorders. Depressive disorders are characterized by sadness severe enough or persistent enough to interfere with function and often by decreased interest or pleasure in activities.
Recent research on health-related stigma recognises the similarities between manifestations and consequences of stigma across conditions and the opportunities this brings for generic approaches. Examples of generic approaches are, for example, a peer counselling intervention for Neglected Tropical Diseases or training on health-related stigma for health professionals. Though these developments are promising, present scaling-up of cost-effective ‘generic’ approaches is hampered by gaps and challenges.
A key gap is the lack of understanding on how the influence of culture can be taken on board in ‘generic approaches’ to assess and reduce stigma. That is, culture can shape the way stigma is experienced by individuals in profound ways. For example, by interpreting a disease as a result of ‘being cursed’ vs. a biological explanation.
Well-known stigma researchers have proposed that the effects of cultural context on stigma can be understood by applying the so called ‘What matters most?’ framework. This study will apply this framework for the first time for the conditions leprosy, LF and depressive disorders. The main research question is: How can the influence of culture on stigma can be taken on board in (generic) approaches to improve assessments and approaches to reduce stigma-related to leprosy, LF and depressive disorders in Indonesia, Nigeria and Nepal?
Interviews will be conducted with people affected by leprosy, LF and depressive disorders. Family members and health professionals will also be included. Based on the analyses, recommendations will be provided on how to improve existing measurement and develop new ones if needed.