24 January 2017: How to break the myth of albinism?

Posted by on Jan 24, 2017 in Blogs, Research Blog: Breaking the Myth of Albinism | 0 comments


blog_picHow to break the myth of albinism?

The first post in a new series by Tjitske de Groot, tjitske.de.groot@vub.ac.be

1 in 1400 people in Tanzania lives with albinism. People living with albinism are often socially excluded and fiercely discriminated in Tanzania, which is a violation of human rights. To improve the wellbeing of these people, interventions to reduce discrimination, or so called stigma, should be implemented. However, little research has been done on the topic of stigma reduction interventions in general. Even less research has been done in the specific case of albinism or Tanzania.
Therefore I am starting my PhD research on Stigma Reduction Interventions related to Albinism in Tanzania. I will work together with people in local communities and in the formal education system in Tanzania. Together we will develop, blog_quoteimplement and assess stigma reduction interventions. There will be a focus on the effectiveness, sustainability and possibilities for distribution of these interventions. With this I want to contribute to the understanding of the stigma attached to albinism in Tanzania and add to the knowledge on health-related stigma reduction interventions.

In starting a research like this it is important to look at the experiences of the people in the field, such as NGO’s that developed awareness raising campaigns. What has been done to reduce the discrimination? What has proven to be effective? What has not?

I am looking for organizations that would be willing to share their experiences. We need to learn more about the different perspectives that people have on the situation of people living with albinism. Everyone possesses knowledge gained from experience: let’s use this! All stakeholders should be involved in research about a stigma that is so deeply rooted in society. Working together with existing organizations, local communities and formal educational institutions will improve the way the results of this research can be used effectively. This way theory will lead into practice, which is very important in these difficult times for people living with albinism in Tanzania.