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How to break the myth of albinism? The development and assessment of albinism related stigma reduction in Tanzania.


How to break the myth of albinism?
The development and assessment of albinism related stigma reduction interventions in local community and formal education in Tanzania.

Health-related stigma, such as the stigma related to albinism, has a large negative effect on the stereotyping and bias towards the affected. The stigmatization of people living with albinism (PLWA) in Tanzania escalated to fierce discrimination and extreme acts of violence. To improve the wellbeing of PLWA effective stigma reduction interventions (SRI) should be developed and implemented (Cross, Heijnders, Dalal, Sermrittirong, & Mak, 2011a). There is a lack of research that focusses on the effectiveness of SRI (Heijnders & van der Meij, 2006; Cross et al., 2011a), no previous study has investigated SRI related to albinism and little research focusses on SRI in the context of Tanzania. Existing SRI related to albinism do not seem to be effective (Brocco, 2015; Cruz-Inigo et al., 2011). This research can shed more light on the effectiveness, sustainability and possibilities for distribution of SRI in different contexts, such as local community and formal education institutes, and the role an existing structure such as formal education can play in SRI. The study will contribute to the field of Stigma and Stigma Reduction as will it add to the knowledge on the situation of PLWA and the Tanzanian society. 
      This study uses the following hypothesis: Cooperation with stakeholders and understanding of the stigmatized and the stigmatizing community is crucial to develop effective interventions to reduce the health-related stigma related to albinism. This study will (1) analyze the social history and current cultural meaning of the stigma related to albinism in Tanzania, (2) identify successful stigma reduction strategies, (3) develop stigma reduction interventions for the local community and the formal education system through the Interactive Learning and Action approach, (4) assess stigma reduction intervention to advance the body of knowledge on stigma reduction and (5) share knowledge on effective ways to reduce stigmatization of PLWA with the local community, formal educational institutes, NGOs and governmental organizations.
      To involve all stakeholders and their experiential knowledge in knowledge co-creation the Interactive Learning and Action Approach (ILAA) will be applied. Mixed research methods will be applied to simultaneously gain a richer contextual understanding and generalizable data. Methods imply: literature review, focus group interviews, in-depth interviews, most Significant Change technique (Dart & Davies, 2003), semi-structured interviews, analyzation of taped meetings and reflection on action and CATIS and EMIC scales.
      The experience of the candidate with the situation of PLWA and the country of Tanzania, the network and strong motivation of the candidate make her a suitable candidate for this project.


Intervention type

VLADOC PhD Scholarships


01/01/2016 - 31/10/2020

This project is being implemented in:
Flemish supervisor Pieter Meurs
Local supervisor Simeon Mesaki
Local partner institution Vrije Universiteit Brussel
visit www.vub.ac.be
Local partner institution University of Dar es Salaam
visit udsm.ac.tz
Budget € 133.412
Scholar Tjitske Magda Maria de Groot