When nothing comes out as planned (or doing some participatory research in the middle of a pandemic)…
In 2020 our team was very excited about planning the focus groups, the workshops, and the meetings for our STOPSTIGMA Project, a participatory research to address stigma and discrimination among users in the health services of Ecuador and Bolivia. We had been working for few months on the design, protocol, tools that a research project needs; including the participation of the Ecuadorian team in a workshop planned to be held in Cochabamba.
However, SARS-COV2 had other plans for us. Daniel, our mentor from CEADES in Bolivia, called one day and let us know that Bolivian borders were closed, few days later Ecuador was in lockdown. Suddenly, our research plans had a turn on -not to mention that our lives, as for millions of people around the world- were upside down. How we will continue? Was the project still viable? Will we survive? Were some of the questions of the team.
As the days passed by we realized that we must continue the project, however, most of the timeline and methodology had to change. From the surveys to the focus group, all were considered to be face-to-face activities, and now almost everything has to swift to remote.
Living in countries where limited connectivity is a daily critical point, we had to figure out how to assure stakeholders’ participation that effectively would respond to the social demand collected in the city of Cochabamba in 2019, from PL WHA (people living with HIV/AIDS) and their family members (As part of the InSPIRES project executed by CEADES with H2020 funding from the EU).
During a workshop, held with users and civil organizations; one of the demands collected corresponded to the measurement and fight against stigma and discrimination suffered by PL WHA within the health facilities in Cochabamba. On the other hand, in Ecuador the conditions and problems are similar, so in the previous contact with representatives of the PL WHA of Quito (personal interview), the same demand was identified.
In 2019, the InSPIRES project launched a call for research with community participation, to which SIEDIES (Ecuador) and the UMSS School of Nursing (Bolivia) prepared a proposal that responds to the social demand collected by CEADES in the InSPIRES project, obtaining the financing for the execution of the participatory research.
The main objective is to reduce the stigma and discrimination attitudes, mainly from the nursing staff, against people living with HIV who are demanding health services in the public health system.
To guarantee the response to such a sensitive subject, the team reframe the research protocol, and along with the InSPIRES team (based in Europe), we decided to do most of the tasks online. The survey was transformed into an online form and most of the workshops were planned to be via zoom.
How to assure that people with limited internet access would either respond to the form and participate in the workshops? Buying data for connection was the answer, we bought “Megas” for their phones in the two countries, and with that, some amazing things happened.
This change allowed more people to participate and even we have people from other cities than Quito (the capital of Ecuador, where the Ecuadorian research team is based) and even, we were allowed to have activities with the participation of people (civil society, nurses, nurse students, and research team) from both countries! (We were able to hold two face to face workshops with doctors and nurses).
Surprisingly, during the Science Shop project, around 350 people from Bolivia and Ecuador were connected. We also had to change the Zoom account since the one we were using was not enough for that amount of participants.
During the whole process, as a research team, we had the incredible opportunity of learning from and with all the participants. Since we all come from a health profession (doctors and nurses) could do a self-reflection of our own experiences during our training and also during our professional life.
In both countries, there is a general perception that even though nowadays is less discrimination and stigma against PL WHA, this is still a problem. Especially in those health services that are not used to these patients (ie. dentist, physical therapy, other specialties) taking into account that in Ecuador as in Bolivia, health facilities for PL WHA are differentiated for other services. (Have also their own space, separated from other health care establishments).
They agreed that information among health professionals is still needed, especially regarding the ways of transmission of HIV. But the factor they recognize as more important was the early contact of students with the diversity: gays, trans communities; not just in the health centers but as part of the relationship between the Universities and the society.
They recognize that moral and religious values and misconceptions have a paramount incidence in the stigma even inside their own communities. (We could see this factor in the results of the online surveys).
All of this is deepen with the lack of resources (financial, human, time) that we are facing in Latin American health systems, aggravated even more during the pandemic; the lack of PPE could be a good example of this. A very important asset was the participation of the Dean of UMSS nursing School throughout the whole process, and her compromise to propose changes into the career’s curricula.
Last but not least, one of the participants was emphatic in telling us: “we do not want to be included, because we are already part of the society; we want to have the rights that any citizen has and have the same respect as human beings”.
Undoubtedly, this was a unique experience for all of us, and such a challenge. Probably is time to rethink research in the ways we have been doing. This could be an opportunity to enhance participation, as long as we can guarantee good internet connections, along with countries and different realities and contexts.