Characterisation of participants

The study included 54 women living in 3 regions of Chile: Tarapacá and Atacama in the north of the country, and the Metropolitan Region in the center. The participants were 21 to 46 years old; 23 were Chilean, 29 were Bolivian migrants, and 1 argentinian, and 1 from Venezuela. The median age is 32. Among the migrant participants, 5 had university or higher technical education, 14 had complete school education, and 12 had incomplete school education. In total, 14 participants were primiparous, and 40 multiparous. Additionally, 13 were married, 21 were in a relationship, and 20 declared themselves single.

Assessments on care for Chagas disease

In the experiences shared by the interviewees, there is a clear and defined opinion regarding the healthcare assistance they received once diagnosed with Chagas disease. The participants formed clear judgments about their experiences with the health institutions and the health personnel with whom they interacted. The testimonies highlighted the importance of information management, including its settings, means, ways, manners, and contents, in shaping the positive or negative evaluation of their experiences. A better or worse perception of the healthcare received since the diagnosis is defined by articulating two crucial elements: information and treatment.

Negative review

The negative assessment is strongly determined by the communicative dimension and the capacity of guidance and containment that healthcare teams have in transmitting the information. The participants expected these teams could guide and clarify doubts and questions about Chagas disease. They are expected to know the regular channels of information and the appropriate procedures they must follow after the diagnosis.

Interestingly, when examining the distribution of negative quotes according to the territory and nationality of the interviewees, it was observed that Chilean participants and pregnant or women from the Metropolitan Region were the ones who tended to express negative sentiments about the healthcare they received. This could be related to the fact that healthcare teams in the Metropolitan Region face Chagas disease diagnoses less frequently. This lack of familiarity with the disease results in little knowledge about the system and the consequent waste of time accused by the participants even in historically endemic areas, as we see in the following story.

¨A lot of confusion… paperwork (…) horrible organisation, horrible administration. Not only with that, with many tests I underwent—tests that were lost, that they could not find… that… I had to undergo them again because something had failed in the test-taking process. Because they would schedule a test that required fasting and tell me to go without fasting… So, that’s why I say that the quality of public health is not the best…¨ (Chilean, Atacama Region, 26 years, primiparous, single).

Poor attention: Bad manners, wrong ways, lack of clarity

For participants, poor healthcare consists mainly of qualitative elements related to the ways and manner in which they were treated and how the healthcare teams delivered the information. Additionally, a bad assessment involves practical issues. The lack of clarity in procedures and the lack of coordination among the various actors and institutional instances involved in the process become essential. Some experiences are echoed across multiple testimones: wandering from one place to another, prolonged and uncertain waiting times for test results, the permanent feeling of wasting time waiting, and discoordination due to the lack of clarity of the institutions and health personnel. Thus, poor attention usually results in pregnant women not being adequately directed or guided.

“You have that availability, because you want to get cured. When I went there, they sent me to the CESFAM. They did the analysis. They told me, ‘Come back in 5 days to receive the results.’ After 5 days, the person from the laboratory tells me, ‘They’re still not ready.’ ‘When should I come back?’ I said. ‘Maybe my boss can give me permission.’ ‘I don’t know. Just come back to find out.’ So I thought, some Bolivians don’t have that availability due to their work, because their bosses sometimes don’t want to give them permission. I returned again, another 10 days had passed, and the tests were still not ready. Then I had to travel to Bolivia. I was 2 weeks there, and then I came back again. Before that, I told my boss, ‘Every time I go to get the test results, they’re not ready, and they don’t give me an exact date.’ So he says to me, ‘I’m not saying this for myself, but I’m saying it for the other people who will want to go to the doctor’. And if one doesn’t have that time available, then you get tired and say, ‘Oh well, I’ll just leave it.’” (Bolivian, Atacama Region, 46 years, multiparous, single).

Some of the participants also reported ill-treatment in the process. In these cases, openly discriminatory expressions due to their status as migrants, perception of nasty looks, ominous tones when speaking, or harsh treatment when performing health procedures repeat across the negative experiences described.

¨Yes… there are times, doctors, nurses, that suddenly… Once, they told me why we came here to make the government spend more money or why we won’t demand better things from our country. In that case, it happened to me… to me…¨ (Bolivian, Metropolitan Region, 34 years, multiparous, married).

Another aspect that emerges from these abuses is the perception of having been treated as ¨weird bugs¨. Voice tones of surprise and curiosity on the part of the health personnel produce discomfort among the participants and lead to a negative evaluation of the treatment received.

¨Sure, when it happened to me, I told this to the doctor, but something happened to me when I was hospitalised. Because, I didn’t know what was going on, because the doctors, you go in, they look at you, and suddenly around ten doctors come into the room, so you feel like a weird bug because they start talking about you, like speaking among themselves, so you don’t understand, the truth is you don’t understand¨ (Chilean, Metropolitan Region, 41 years, multiparous, single).

As can be seen, the emotional dimension of treatment and attention is fundamental for the participants, as is the aspect of information. Not only are the scarcity or absence of sufficient explanations assessed negatively, but also the ways, manners, and means by which the teams conveyed these explanations. In this way, receiving information by telephone without further explanation, as well as experiencing long waits and excessive apprehension when the diagnosis is reported, is perceived negatively. The notion that the communication of the diagnosis was done lacking empathy and transmitting fears and insecurities is part of a poor perception of the attention received.

¨I feel that she was like super little empathetic, the girl who informed me. Also understanding that I was pregnant and had just found out, and that I had had another lousy pregnancy experience. She told me that I had to talk to the infectologist, you know? And the procedure, I also want to tell you, is super inappropriate, I believe. Because, in the end, they tell you over the phone that you have to go urgently to talk to the girl over there, so you go and like, okay, I came, and what happens? No, ‘You have to wait because the boss has to attend you, because we’re not authorised’… so, I don’t know, you think it’s something else entirely. So hear this out. I went into the office and, ‘Okay, but you have to be alone, your husband has to leave,’ and I was like, ‘no, I do not want him to leave”… so everything was… to find out that I had Chagas disease was stressful. I think I had the baby here (points to her neck), you know? Like that. It was terrible. No, no, super bad¨ (Chilean, Metropolitan Region, no age information, multiparous, no civil status information).

¨But there was an episode that happened to me. I think Ana was the girl’s name; the truth is I don’t even remember anymore. I was hospitalized one night and she looked at me and said, ‘Have you asked what you have?’ I said, ‘No, I haven’t asked anything.’ And she looked at me and said, ‘Yes, because what you have, you can die from it.’ So I was plop [shocked], and then that same girl looked at me and said, ‘Why do you have that face?’ And I looked at her and said, ‘What face do you want me to have after what you just told me?’ And I told this to the doctor. And I told her, I gave her an example, I told her, I am a person, I consider myself super strong, that I have been through a lot in my life, so, on top of that, I am a single mom, so one has to be strong. So I told her, if it had been a weaker person mentally, and that person, I had the window right there, if it had been another person they would have killed themselves. So I told her that I thought she should not have done that. And, well, she did it to me, I don’t know if she’s done it with any other patients, but I told her it’s not her, I think it’s the doctors, not the nurses [that should convey delicate information]¨ (Chilean, Metropolitan Region, 41 years multiparous, single).

¨And, uh, but my pregnancy, at the beginning, it was terrible because the doctor, who was a lousy doctor in my opinion, I, uh, I mean, she said, ‘Everything is wrong,’ as if my daughter was going to be born with malformations; that, if I didn’t know anything about this, how could I dare to get pregnant with him. And then I said to her, ‘No,’ I mean, ‘I didn’t know I had this when I got pregnant.’ Anyway, lousy doctor. I left there crying, and I wandered alone, calling my husband on the phone and everything¨ (Chilean, Metropolitan Region, 40 years, multiparous, no civil status information).

The last dimension that contributes to a negative perception in terms of information relates to the participants’ perception that the health personnel did not handle the information about the disease correctly and accurately. This uncertainty transmitted by the health personnel causes great insecurity in women during pregnancy. In this way, references to the fact that the health personnel gave them contradictory and confusing information or that they themselves did not know about Chagas disease are echoed among the accounts that evaluate their experiences negatively. This allows us to affirm that the moment in which the information is delivered, during gestation, is crucial. The reception, emotional containment, and treatment at this stage impact people’s evaluation of the system; a system that lacks information, transmits insecurity, and reproduces discomfort in people.

“Yes, I think there was a lack of organisation and more information considering how people were operating right there. Because the doctor, when he saw me, said something totally different to what I learned later. Because the doctor told me, ‘You can’t breastfeed, forget about it. You’re going to transmit your Chagas disease and delay your treatment through breastfeeding. So I forbid you to breastfeed; when you have your child, you won’t breastfeed.’ And I was shocked. I thought, ‘Okay, I’m going to have to not breastfeed him.’ And, obviously, when you’re a mom, you want everything to be perfect, the attachment and all that. Then I left his office and went to the… and he said, ‘What does the doctor say?’ And I told him this, that he forbade me to breastfeed. And he said, ‘No. Here in Chile, it’s not the same.’ Because the doctor, I do not know where he is from, maybe Ecuadorian and… ‘It is not the same as in his country. You can breastfeed here; there is a law that supports breastfeeding. But it is your decision. If you do not want to give milk and prefer to start this treatment as soon as possible to help the little one, it’s up to you to decide’” (Chilean, Atacama Region, 26 years, primiparous, single).

¨So I arrived at the I-do-not know-what, ask if he remembered me, and said, ‘Well, here is the result.’ And he said, I mean, Gutiérrez, the high-risk chief of the Hospital, the sonographer, I mean, a guy who has to be like fifyt years old, fifty-something, and he tells me, ‘I had never seen a pregnant woman with Chagas before.’ I thought ‘God, what do I do now.’¨ (Chilean, Metropolitan Region, 36 years, multiparous, married).

¨they should have more information. Because I, what I realised was that the doctor who attended us, she would read in order to give us the pills… she would read from the internet. I don’t know if she was from another country or I don’t know, but she would read how much the dosage of the pill was, for how many days I had to take it… she didn’t know…¨ (Chilean, Metropolitan Region, 35 years, multiparous, married).

Finally, the last element contributing to a negative assessment of healthcare is the lack of a satisfactory explanation accompanying the diagnosis. In other words, the perception that they give confusing information that fails to answer their doubts about the disease. In this way, references to the healthcare team not informing them about the test for Chagas disease, providing very rapid, very general, or superficial explanations of the disease after diagnosis, or failing to offer information that would allow them to feel informed are repeated across testimonies.

¨I would be able to explain very little because at least I wasn’t given much information; they gave more infromation to my daughter¨ (Chilean, Atacama Region, 36 years, multiparous, single).

¨With the Chagas disease test… they didn’t tell me they were going to test for Chagas disease. I didn’t know what Chagas disease was. They just told me they were going to take a blood test for anaemia and a urine test for infection, but nothing else¨ (Chilean, Atacama Region, 28 years, multiparous, in a relationship).

¨only the doctor was there. A little rushed because behind me there were people that had been waiting for a long time. He chats with me breifly and says, ‘I’ll explain it to you someday.’ I respond, ‘okay’¨ (Bolivian, Atacama Region, 40 years, multiparous, single).

¨Yes, because when you go to the doctor, they don’t tell you anything, they don’t explain… they tell you it’s a silent disease¨ (Bolivian, Atacama Region, 36 years, multiparous, single).

Positive review

The positive assessment of the healthcare received after the diagnosis of Chagas disease encompasses situations that can be understood as the opposite of what was described above concerning the negative evaluations. In this way, the idea that the treatment was attentive, personalised, precise, and timely, and the perception of having received sufficient information contrasts with the lack of information and the poor manner in which it was transmitted.

It is interesting to note that, when analysing the distribution of quotes that give an account of the experiences evaluated according to the territory and nationality of the interviewees, it was observed that migrant participants and women from the regions of Tarapacá and Atacama were the ones who tended to express positive sentiments about the attention they received. This must be interpreted against the grain, as migrants are often not in the same position as national participants to express their discontent with the Chilean health system. When analysing the elements that make up a positive evaluation of the care experience among participants, the elements that emerge as defining also articulate information and attention as the dimensions that underpin the interviewees’ perceptions.

Good attention is clearly defined based on the perception of having received personalised attention. In this sense, any gesture by health personnel and health institutions towards their particular needs, such as providing facilities and priority in terms of waiting times or procedures, is crucial to understanding the positive assessment of healthcare after diagnosis. For the participants, good attention is one that considers their times, does not make them wait, is attentive to them, guides them clearly through administrative procedures, and provides timely information and containment regarding the Chagas disease.

¨But yes, very good attention. Because, for example, sometimes I couldn’t go to get the test done, and they would arrange transportation for me, and they would ask me when I could come. So whenever I went, they were always very attentive, including the person in charge. And the secretary is always calling me…¨(Bolivian, Atacama Region, 46 years, multiparous, single).

¨Yes, I felt good, I felt comfortable (…) I started to feel calmer then. But with the treatment everything was fine, no problem. If I needed anything, I would go to the hospital. I would go to ask if I had any doubts, and they were always there to help, when I could. We never had any problems. When they did the tests, they would also explain them to me: that the bugs had decreased, that the treatment was going very well…¨ (Chilean, Atacama Region, 28 years, multiparous, in a relationship).

The adaptation of services plays a fundamental role, especially when discussing women and migrants. This is especially important when considering the complexities around work conditions. Migrants, in particular, face more significant challenges related to authorisations and the legitimacy of healthcare permits.

¨ as I was saying, the constancy is a seven [very good]. They are always attentive. And there are days, let’s say, when I cannot ask for permission at work because it complicates things a bit for me, so she always schedules me on Mondays, when I can. So, that availability is not provided everywhere¨ (Bolivian, Metropolitan Region, 32 years, pregnant, in a relationship).

Finally, receiving timely, precise information that transmits positive messages and that they perceive as sufficient are the qualities of the last dimension that defines a positive experience.

¨If I needed anything, I would go to the hospital. I would go to ask if I had any doubts, and they were always there to help, when I could. We never had any problems. When they did the tests, they would also explain them to me: that the bugs had decreased, that the treatment was going very well, that we were going to cut it because I had to give my body a rest. And, with the last treatment, they said no, that we had to cut it because it was affecting my liver. So, that more than anything. Also, regarding the issue of going to the bathroom a lot, they also explained to me that it could be due to the Chagas disease, that maybe I could have it in my colon, but that that’s what colonoscopy was needed for¨ (Chilean, Atacama Region, 28 years, multiparous, in a relationship).

¨Very good, yes… very good. Here, they explain things to you and also tell you what you need to do. And the attention here is excellent ¨ (Bolivian, Atacama Region, 28 years, primiparous, in a relationship).

¨Good, because they explained to me what it was like, uh… what it was about, how it was done… what happened to the intestine, to the heart… so, yeah, they explained that. And the attention is good. They already gave me a treatment, but I didn’t take it, I mean… the tablets did me no good, I mean, the meds they gave me didn’t sit well with me¨ (Bolivian, Atacama Region, 34 years, in a relationship).

Communication, providing timely information, and containing feelings of distress or unawareness are particularly significant in the care processes and, thus, in the positive evaluation of services. Communication during diagnosis is decisive for the continuity and pursuit of treatment. In cases of reaction to side effects, accompaniment, information, and communication are crucial for a successful completion of the process.