Every minute, Malaria kills a child somewhere in the world. Of those who survive, hundreds of thousands are left with permanent brain damage and disabilities. These children and their parents are trapped in a cycle of poverty that is compounded by disability.
Over the past ten years, Malaria study 13, funded by the World Health Organisation, has been investigating the impact of a particular drug on children who suffered brain damage from malaria at an early age.
When the time came to disseminate the findings from the research, the research team thought that digital stories would be an impactful way to convey the experiences and communicate the disastrous effects of malaria on the children and their families. A grant from Grand Challenges Canada funded the work: Patient Voices teamed up with Burgess Communications, a Canadian-based agency, to form the communications team.
We worked closely but remotely, via Skype, email and phone, with the principal investigator based at the World Health Organisation in Geneva and researchers from the National Institute for Medical Research in Tanzania to set up and prepare for the project, brief the parents (who spoke Swahili) and ensure that the project would be conducted to the highest ethical standards.
We travelled to one of the poorest districts in Tanzania where we worked with parents and their children to create digital stories about the impact of malaria on their lives. The stories illuminate the profound challenges faced by these families and reveal some rather surprising information that could change the way malaria prevention is viewed by well-meaning organisations in the West.
The stories have had a significant impact in terms of disseminating the results of the research and illuminating the experiences of those affected by malaria. We showed the stories at the National Institute for Medical Research in Dar es Salaam. They offered new insights to medical researchers into the experience of families living with malaria and posed important questions in relation to the provision of mosquito nets as the most effective means of preventing malaria. Screenings at several international conferences have raised awareness among western audiences of the impact of malaria on children, prompting fundraising and other initiatives intended to support families affected by malaria.
The stories will also be used to attract funding for further research. The Principle investigator had this to say:
‘I have consistently asked for the addition of some funds to capture the economic consequences of malaria. It is clear to me now, that some of these stories make the case for looking at the economic consequences of severe disease and sequelae far more powerfully than I can (or have!).’