For the last four years, within Mundo Sano, I have been part of an interdisciplinary team that accompanies people with concerns about Chagas disease, who contact us through social networks, email or telephone calls. Over these years of accompaniment, our team has collected some learnings about this process, which is based on active and empathic listening and aims to let people know their rights of access to health.
At the time we receive a consultation, a new follow-up starts, and for us, that person has a name, a history and a unique process. We believe that personalized accompaniment is a fundamental tool to facilitate access to diagnosis and treatment of the disease.
Considering the history of Chagas disease in our country, we make a conscious effort not to abandon people until the case can be successfully concluded. We listen to their doubts, consultations, fears, possibilities, desire to succeed, even their frustrations when it is too late to receive treatment and they did not know it was possible. We consult our contacts in the search for real options to refer them safely and independently of their geographic location. For instance, through the members of this network, Red Atendiendo Chagas, we try to ensure that they don’t give up during this process which, in some cases, is not linear.
The time each case requires is very variable. Some patients may need only a call that helps to guide them with correct information or to recommend that they should have their annual check-ups when they do not meet the criteria or indications for treatment. However, in cases of doubt about diagnosis or interest in starting treatment, duration depends on several factors. We have had active cases for more than three years.
We understand that, under the right conditions, this process should take a few months. Among the more than 100 cases received, we have attempted to identify, in the actors’ stories, some of the reasons for delay in diagnosis and/or treatment during follow-up.
People that make consultations give their reasons, and there are many. The life of every person, with its special characteristics, processes, problems and priorities, invites us to look at an array of causes. The following are some of them.
We found the lack of time due to work commitment. Many people feel that it is not “valid” to be able to ask for time off work to go to the health centre due to this issue. In turn, some people work by the hour or day and, if they don’t work, they don’t earn any money, which they cannot afford. On several occasions, the health centre is open for a few hours and that time coincides with their working time.
Another reason is the geographic distance to the office where they are attended and /or have the tests done, because they don’t have a means of transport or the economic resources to go to the health office. We have to bear in mind that some people who contact us live several kilometres away from the nearest health centre.
There are also other health problems (affecting them or other family members), which they give priority over Chagas.
In the case of people with children, some of them have told us that they wait until the school vacation period to have their children tested. When the children are already adolescents or adults, they refuse to be screened because they think they are healthy. On occasions, they do not find the old tests (their own or those of their children), which hinders the possibility of confirming the diagnosis.
Some patients state that they are moving out or supporting a given situation at home, and that they prefer to wait for some time.
Regarding getting a medical appointment, some people mention that they forget about it or they still have not been able to do so because they have to go in person at specific times, which are not convenient, and which implies an additional effort. The same happens when they have to collect the results in person.
Some people have abandoned treatment due to adverse effects of the medication; that situation has generated rejection and fear; or they simply have not received another option to resume treatment.
We were able to identify that the main causes for not having consulted before are related to the lack of information. They have never been told what the disease is nor have they received any information about the treatment when they were diagnosed. People mention some reasons related to the information they received from the doctor, such as that there is no treatment/cure; that when there are no symptoms, no treatment is provided, and only check-ups are recommended; that the doctor they consulted does not know about the treatment or does not recommend medication; or that they are above the age limit to be treated (which is not true), among other reasons.
Other people mention that they did not know they were infected with Chagas, although there were several reasons to suspect it; finally, they also said that, to date, they have had no complications, so they have not felt rushed.
During the time we have been doing this task, we have confirmed that there is a social need and a free space, where accompaniment makes the difference regarding the possibilities of access to health. Considering this, we have made progress in some procedures and common ways of giving response to different situations without losing sight of the fact that histories vary and require individualization, a “homemade” follow-up that we try to keep unchanged. On several occasions, this is how good results are achieved and a close exchange occurs with the people that confidently come to us, so that they feel that they are not alone on this way towards access to diagnosis, reliable information and, if possible, cure through treatment.