We Want to Tell Our Own Story

Barcelona CaixaResearch Living Lab organises the #VocesDelChagas campaign

For the last fifteen years, people who left their country in search of work and a better life for their families have been seeking medical care at the International Health Service of the Hospital Clínic de Barcelona (SSI-HCB), the Drassanes International Health Unit (Vall d’Hebron-PROSICS) and other medical services in Barcelona. This demand for specialised care for Chagas disease—a condition associated with the cardiac and digestive complications that affect as many as 30% to 40% of people infected with the Trypanosoma cruzi parasite—is evidence of how these patients have transformed not only their own lives but also those of their loved ones. In most cases, the patient’s decision to book an initial visit at the SSI-HCB is the result of a conversation with someone in their family or community. For this reason, when the “Barcelona CaixaResearch Living Lab” embarked on this adventure, we decided to work together with the community, which had already demonstrated its engagement with a challenge that, in our opinion, can only be overcome by effective solutions designed and implemented jointly by all the stakeholders (co-creation).

A proposal was drawn up to create a channel to enable civil society “ambassadors” to tell their stories so as to raise awareness in the community

Listen First

“Listen before proposing” was the guiding principle of the first workshop, which was attended by representatives of the Association of Friends of People Affected by Chagas Disease (ASAPECHA) and the Argentine, Brazilian and Paraguayan communities. Among the Bolivians who attended were the people who had participated in “¡Pasa la voz!”, an initiative designed to spread the word about Chagas disease in the affected community. Other groups and institutions joined later, including representatives of the Colombian, Salvadoran, Honduran and Nicaraguan communities and of the Drassanes International Health Unit (Vall d’Hebron-PROSICS), the Federation of Latin American Entities in Catalonia (FEDELATINA), Barcelona City Council and ”la Caixa” Foundation.

When the embarked on this adventure, we decided to work together with the community, which had already demonstrated its engagement with a challenge

By the end of the first workshop on proposals that could effect change, the lines of action in which civil society participants wanted to become involved had already been identified. The lines of action later systematised by the Living Lab team and adopted as priorities by the group were as follows: 1. Communication, destigmatisation, raising awareness; 2. Improving diagnostic systems and medical care; and 3. International cooperation to ensure treatment for excluded persons in countries where Chagas is endemic.

Based on this agenda for fighting Chagas and thanks to alliances forged along the way, agreements were made and projects proposed to further the second priority (decentralisation of early diagnosis and comprehensive care in Barcelona) and the third priority (cooperation with the Spanish Society of Cardiology and the Fundación Puente de Solidaridad to set up training programmes for medical professionals in Bolivia and to raise awareness about the possibility of donating pacemakers to people in need in that country). To date, these projects have been postponed due to the repercussions of the COVID-19 pandemic on primary health centres in Barcelona and Bolivia, but the expectation is that they will be implemented in the short to medium term.

In the meantime, without wasting time, the organisers decided to start working on what had been clearly identified as the highest priority.

During seven workshops, the group of participants identified three lines of action and worked on a proposal aimed at communication, destigmatization and awareness-raising. (A. Cabrera)

A Co-Created Communications Strategy for Here and There

One of the main reasons why Chagas disease is classified as a neglected tropical disease may be that an estimated nine out of ten people infected by the parasite are unaware of the fact. The World Health Organisation estimates that between 6 and 7 million people are in this situation.

Communication is, therefore, an urgent priority. However, as one participant in the process pointed out, “it is one thing to talk about something and another to know how to talk about it”. A proposal was drawn up to create a channel to enable civil society “ambassadors” to tell their stories and explain their engagement with the initiative so as to raise awareness in the community and increase access to Chagas care both here and over there.

The aim of the initiative is to provide these ambassadors with quality materials, co-created together with the community. These materials are based on real-life stories and have been designed to be easy to disseminate through social networks.

Leonardo de la Torre (ISGlobal) presents some of the materials resulting from the co-creation work. To his right, Emilia Rodríguez, one of the participants and testimonials of the initiative, listens attentively. (A. Cabrera)  

Transforming the “Monster of Fear”

As often happens, one of the participants attending a workshop brought along her young son. While another participant was describing how fear caused the sensation of “a lump in your throat”, the child started to draw a monster on the paper give to his mother’s group to write down their conclusions. Emilia Rodríguez (a member of ASAPECHA) proposed that his drawing should be presented as part of the conclusions since, while it is true that fear is a monster, it can be overcome or at least transformed.

In one of the workshops, Emiliana Lima (on the right) shared the satisfaction of not having transmitted the parasite that causes Chagas disease to her children, after having followed the treatment. (A. Cabrera)

In subsequent workshops, the idea of the monster persisted as a symbol that summarised the group’s conclusions and the metaphor was adopted by the participants. In time, “The Monster of Fear” became an animated video reflecting the real-world situation and created to convey an idea and an emotion in just two short minutes.

And it was Emilia Rodríguez who featured in the video, the first in a series made mainly using pixilation techniques thanks to the work of the production company Pequeños Dibujos Animados (PDA). The video was directed by Mario Torrecillas in collaboration with Blai Tomàs, one of the winners of the award for Best Photography at the 2021 Festival de Málaga Tomás El vientre del mar.

Emilia Rodríguez, one of the Chagas Voices (#VocesDelChagas), told the audience what the "monster of fear" that knotted her throat was like. (A. Cabrera)

#VocesDelChagas: a Co-Created Campaign

Click this link to hear the stories of Emilia, Emiliana and Walter in the first three videos produced by #VocesDelChagas (Chagas Voices). The campaign objective, which clearly reflects the principle underpinning our process, is to destigmatize Chagas in order “to activate communities and encourage collective action”. We are joining forces with others who believe that sharing first-person testimonies can be a first step towards transforming the reality of Chagas by breaking the silence surrounding this disease.

In fact, you too are invited to use the #VocesDelChagas Kit of materials and messages for social networks to spread the word on WhatsApp, Twitter, LinkedIn, Facebook and Instagram and to tell your own story to others in your community. The people who take part in this initiative will be the first to promote this communication effort on the social networks, in events, on the radio and even in training events held in consulates.

No one should tell us what we should say, we want to tell our own story. We have to be our own voice

“The way participants are validating the proposals is remarkable,” comments Javier Bonomi, representative of FEDELATINA. “Co-creation is not an easy process but in this case it is working.” “I identify with all the videos you have shared”, said another participant.

There is still a long way to go in this process, following the chosen line of action: the people affected should be the ones to tell their own story.  Víctor Orosco, former president of ASAPECHA and one of the key organisers of the initiative, explains it better: “No one should tell us what we should say, we want to tell our own story. We have to be our own voice.”

You are invited to use the #VocesDelChagas Kit of materials and messages for social networks to spread the word and to tell your own story. (A. Cabrera)