Research on albinism in Tanzania

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Successful pilot project to tackle discrimination

13 June is International Albinism Awareness Day

One in 1,400 people in Tanzania has albinism. These people are often socially excluded, heavily discriminated against and sometimes even have to fear for their lives. Dr Tjitske de Groot of the Vrije Universiteit Brussel set up a pilot project for her doctoral research and investigated what actions and means could be used to reduce the stigma of albinism - as well as other stigma - and actively contributed to this on site.

De Groot: "Through our research, actions to reduce the stigma of albinism will be further developed, implemented and evaluated in local communities and in Tanzania’s education system. It is very important that each action is also carefully evaluated for effectiveness and sustainability."

People with albinism are highly stigmatised in Tanzania. Yet little research has been done on how to eliminate or reduce this stigma. Research on health-related stigma has already shown that education and contact strategies can be effective. For her doctoral research under the supervision of Prof Pieter Meurs and Prof Wolfgang Jacquet, Tjitske de Groot of the Faculty of Psychology & Educational Sciences investigated the applicability of such strategies to albinism stigma in Tanzania.

To measure stigmatising attitudes towards people with albinism, De Groot began by adapting and validating existing quantitative measuring instruments to the local context through workshops, focus group discussions and interviews. In addition to the quantitative measuring instruments, she worked on the applicability of a qualitative method. Using the visual vignette method, she gauged attitudes towards people with albinism.

De Groot: "People are inclined to give socially desirable answers to questions about their attitude towards people with albinism. To rule this out, images were used, showing an encounter between someone with and without albinism. Participants were asked how they thought other people would react in such situations and what they would think about it."

Also applicable to other stigmas such as HIV/AIDS or leprosy

In cooperation with local organisations, various types of activities were then tested for their ability to reduce the stigma of albinism. For example, a theatre play was performed throughout the country, including in primary schools. Video clips were shown in secondary schools and radio programmes were produced and broadcasted to various local communities.

The results show that it is important to inform the population about albinism and to introduce them to people with the condition, so people with albinism can be seen and experienced as ordinary people. The research also shows us the important role that people with albinism themselves can play in a stigma reduction programme, by being self-confidently visible.

Based on this, De Groot and her colleagues made a number of recommendations. Among other things, they pointed out that some activities were very good and worked well, such as the theatre play, but that the dissemination and costs of such an action should also be taken into account. A radio programme, for example, is much easier and cheaper to make and can easily be distributed.

De Groot emphasises that every strategy must be carefully monitored and evaluated: "Our research shows that not every method had the positive results that were expected, and that some actions could also have had a greater impact. Sometimes some people thought more negatively of people with albinism after a programme than before. And we also need to evaluate how important entertainment ultimately is. For example, we found that if a theatre performance is too much fun, it overshadows its actual purpose. After the theatre performances, the audience sometimes talked mainly about how much fun the singing and dancing had been and not so much about what they had learned about albinism."

The recommendations made by De Groot can also be used for other forms of discrimination.

"Our findings and recommendations actually go beyond albinism. The measuring tools and proven strategies to reduce stigma can also be used for programmes that focus on other types of stigma, such as HIV/AIDS or leprosy."


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