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Experiences of research participants

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[SPEAKING PORTUGUESE] So they were asking questions that they hoped would find why Zika had caused microcephaly, or whatever. But they weren’t saying to you what would help the future of your child. Yes. The researchers were more turned on to discover the reason, and discover what is Zika in relation, not to make things that change our future life. You still also had to answer something about my life for a stranger, for a new person. One time is OK. Two times is OK, but three, four, or five end times is that.
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It was very, very tiring, very tiring to do this.

In this step you will hear from Mila Mendonça and Joana Passos, two mothers of children with Congenital Zika Syndrome in Brazil. They talk about their experiences being part of research studies during the peak of the Zika epidemic in the country.

After you have watched the video, consider the following questions and share your responses in the comments section below:

  • What were some of the themes that the mother’s raised in sharing their experiences of the research in to Zika?

  • Considering what you have learnt across the course, what could be done to improve the experiences of research participants? Think particularly about participatory methods, and inclusion of people with lived experiences in research.

Video supplied by ITN via Getty Images

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Global Disability: Research and Evidence

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