Introduction

Chagas disease is caused by the Trypanosoma cruzi parasite that can be transmitted through several ways. One of them is through hematophagous insects that inhabit the American continent from the United States to the southern cone. Another is through the transfer of the parasite by means of the contaminated feces of the vector known as vinchuca, bedbug, kissing bug, barbeiro or pito ¹ through the skin and, orally, through food and liquids contaminated with the depositions of these insect vectors.² It is also transmitted through the placenta during pregnancy, or due to uncontrolled blood transfusion or organ transplantation. Complications caused by the parasite are mainly associated with cardiovascular, digestive and, in some cases, neurological problems. However, it is estimated that only 30 % of infected persons will develop any complications. Undoubtedly, timely diagnosis and treatment are key for the prevention of vertical transmission (mother-child) and for a satisfactory quality of life for people living with this condition. ^3,4

Much progress has been made in reducing the number of infections; proof of this is that Chagas disease has gone from a worldwide prevalence of more than 17 million people in the 80's of last century to 6 to 7 million people today. ⁵ Today, this health problem is considered to be of a global nature due to urbanization, climate change and human mobility, which have changed the profile of American trypanosomiasis; however, in the past it was considered endemic to the American and rural continent. ^{2,6 - 10}

In Chile, progress has been made in vector control, universal screening for transplants and in creating the conditions for universal screening of pregnant women in public or private health care facilities; however, progress still needs to be made to achieve screening of all pregnant women in health care. Although diagnosis and treatment are universal and guaranteed by the health system, it is estimated that more than 120,000 people are carriers of the disease in the country, and progress still needs to be made in identifying those affected by Chagas disease. ¹¹ To better address the problem, the Plan for the Control and Prevention of Chagas Disease was created in Chile in 2014 by the National Ministry of Health (MINSAL). In this context, the technical standard number 162-2014 set as a goal for the year 2017 the screening of 100 % of pregnant women, however, this figure only reaches 64 % of the target population by the year 2020, at the national level, with a lower percentage in the southern part of the country. ¹² The latter is especially worrisome because the most efficient way to avoid vertical transmission of Chagas disease is to identify the parasite in women of childbearing age and treat them before future pregnancies, which effectively reduces transmission through the infected placenta. ¹ This, together with the 1.2 % prevalence of the disease, constitute the most important problems related to Chagas disease in Chile. ¹³

It is evident that strategies to reduce the number of Chagas disease cases need to transcend the traditional perspectives of biomedical observation of the condition, going from zoonotic and clinical studies ^14-16 to dimensions that incorporate the emotions and feelings of people in relation to Chagas disease. ¹⁰ In this regard, this study has considered the need for health care with a comprehensive approach where feelings and emotions are raised as fundamental aspects for the health of people. ¹⁷ The feelings and emotions of people with Chagas disease with respect to the disease hinder or favor adherence to treatment and interaction with health teams at different levels of health care. ^{(17, 18)} Ventura García et al. ¹⁹ identify that fear of diagnosis is established as an important barrier to access health services, and this emotionality is also linked to latent risk. ²⁰ In the approach to the problem of Chagas disease and migrant pregnant women, according to Avaria and Gómez, fear and guilt are closely related to the diagnostic processes linked to pregnancy. ⁽²¹

The lack of information and knowledge about Chagas aggravates the negative emotions of those who suspect they have the disease. ³ Fear, sadness and feeling bad, according to the reports of possible carriers, are negatively affected by the discrimination that people diagnosed with T.cruzi have reported suffering ²² discomfort and the experience of a low quality of life and depression emerge especially in chronic cases and people who develop cardiac involvement. ^6,23 The barriers faced by people, especially migrants, are related to the difficulties in accessing health care, the side effects of treatments, the need to address the complexities of mental health due to the possibility of developing depression and the barriers related to the lack of knowledge of health teams. ²⁴ Research shows the violation of rights experienced by people with Chagas as workers, students, etc., and alarmingly, as users of health systems. ^{6, 25)}

Situations such as the one reported by Van Wijk et al. are of special attention, an interviewee shared the experience of being told by a health worker when he went to donate blood: “your blood is useless, we are going to burn it, and you are going to die of Chagas disease, go to the doctor”. ⁽³ This type of cases observed in the Colombian context and in others, show prejudices, tensions and asymmetries in which the concerns, feelings and emotions of the people are not incorporated in the strategies for dealing with Chagas disease.²⁶ The role of health technicians and professionals is fundamental in the diagnosis and treatment process. In these critical stages, people require emotional support and place great value on the communication they establish with technicians and professionals, especially with members of the health care team. An example of this was reported by Jimeno et al. in the testimony collected by them: “At each check-up, the doctor carefully explained to me how I should take the pills, how Chagas disease comes and how I should take care of myself, now I am healthy, now I am calm”. ⁽⁶ This global health problem is a challenge that should actively involve health teams and the people affected through social organization.^27,28

In this scenario, health workers can contribute to detection and adherence to treatment, incorporating family and community approaches in order to connect with people. Uncertainty and lack of knowledge about Chagas disease decrease when the family and community environment is used to intervene with people. ⁽²¹⁾ The data show the relevance of health teams working not only with the affected person directly, but also, and this is significant, with their family environment, friends, and community referents. Jimeno et al. add that the family has a great psychosocial-emotional impact on living with, resolving or eradicating the disease. ⁽⁶ Their research group detected, for example, that for women with Chagas disease, it was fundamental to keep themselves in good health conditions to take better care of their children and family. Mothers, fathers, sons, daughters, friends, and other relatives are an integral part of the stories of support and emotional accompaniment that, according to the people observed, have helped them to be diagnosed and treated. ²⁸ In this sense, successful experiences in dealing with Chagas disease are linked to the individualization of people, i.e., the consideration of their family and social identity crossed by subjectivities and emotions,²¹ especially, but not exclusively, in migration contexts. Sociocultural understanding is relevant, as well as the articulation of people through the community approach, empowered peers or through associativity. ^21,25,26,28

On the other hand, regarding Chagas disease, the evidence indicates that the social components of the problem are scarcely considered, with the biomedical approach being the most predominant. There is little or no incorporation of interpretative perspectives that consider the experience of affected persons in the design of intervention strategies in Chile. ² Although the guidelines of the National Plan for the Prevention and Control of Chagas Disease through technical standard n.° 162 of 2014 and its consequent operationalization in the Procedural Manual for the Care of Patients with Chagas disease ²⁹ consider the family context of the person with Chagas disease, this link is established from the active search for the detection of T.cruzi. However, it is necessary to broaden the understanding of Chagas disease, considering the subjective components that determine access and diagnosis, and people's adherence to treatment.

The general objective of the research project was to analyze the experiences and meanings of Chagas disease in national and foreign women and men and in health care teams. Considering the current diagnosis, care and follow-up of Chagas disease in the regions of Tarapacá, Atacama, and Metropolitan. Thus, improving people's health through the implementation of the Technical Standard.

With all the above, we intend to justify, through this paper, the need to investigate the aspects that involve the feelings and emotions of the people who experience the phenomenon of Chagas disease in Chile in its various contexts, to know the personal and family experiences of people with Chagas disease in the country. All this to build and analyze a corpus of experiences that allow to advance towards humanizing strategies that favor the diagnosis, timely and permanent treatment of affected people. The description of experiences related to Chagas disease has the potential to obtain recommendations to bring health services closer to more people, but with a personal, family and community emphasis that can progressively lead to better living conditions and social and health outcomes that will bring about improvements and benefits for those affected and their environment.

Methodology

The methodology used in the study is applied qualitative. To analyze the experiences and meanings of Chagas disease in national and foreign women and men and in the treating health teams, which occur in the current diagnosis, care and follow-up of Chagas in the regions of Tarapacá, Atacama, and Metropolitan Chile between the years 2019 and 2021. These geographical areas were selected both for being of historical prevalence for Chagas disease ² and with an important presence of migrants from endemic areas. A total of 175 people were included, among whom pregnant women were interviewed. This is a key group, since the technical standard indicates that all pregnant women should be screened. Nationals and migrants positive for T.cruzi, diagnosed in blood donations, were selected to receive information and treatment. Interviews were conducted with health teams and with health teams involved in blood donation, the latter having been incorporated, after having noted the low number of migrant donors with Chagas disease detected in each region. Interviews were conducted with key informants. On the other hand, focus groups were conducted considering people without Chagas disease who were treated at primary and secondary health care levels: men, women and pregnant women in each region. For this article, we will only consider the results related to pregnant women and donors (see Table 1).

Table 1: Interviewees and technique applied 

^Source: Own elaboration (2022)

The techniques used to collect information were in-depth interviews, semi-structured interviews, and focus groups. The first was developed using open-ended questions to identify emerging issues. In the second, a series of questions were used to contrast the responses of the health teams. For the focus groups, a guideline of questions was used, these instances were constituted with pregnant participants attended in primary health care (PHC), also with women and men attended in PHC, in both cases without Chagas. The research was initiated pre-pandemic and closed during the pandemic, being this process particularly complex. The result of the application of the techniques allowed the creation of an abundant textual corpus from the transcriptions of the interviews and groups.

The fieldwork was carried out by a methodological manager for each region, initially in person and then telematically. The management of contacts was facilitated by the treating health teams. Field work was managed in each region. A team of assistants was trained and supervised to support the interview work, and they were responsible for transcribing the material. The initial contact with the people affected was made by the health teams treating them, in order to contextualize and invite them to participate in the study. Then, the project research team framed the study, explained, and gave informed consent to the participants. It should be noted that not all the people contacted by the health teams agreed to join the process.

The analysis of the focal and global information was guided by the proposal of constant comparison within the framework of Grounded Social Theory (GST). ^30,31 In this context, it was initially coded and analyzed in an open way, which was derived, in successive and recursive stages, towards axial coding through a series of relationships between codes (Table 2).

The analytical coding process was initially developed in parallel by the research team, based on the construction of codes associated with the specific objectives and their categories, on a selection of interviews, after which they proceeded to identify emerging codes, i.e. those that were not previously considered and that became evident in the process. The coding was subjected to discussion, and the codes and their meanings were unified to create a codebook. The code book was used to be applied to all the interviews and focus groups conducted, organizing this analysis in relation to the subjects: pregnant women, donors, health teams. A process of open coding (in vivo) of the interviews was carried out, the number of codes was expanded and adjusted, and they were grouped, based on more complex interpretations that allowed unifying the codes, establishing relationships and configuring categories related to the specific objectives.

We then proceeded to integrate the categories and their properties, to establish relationships that could be of an explanatory relational nature of causality, results, significance, relating each incident (axial coding) and subsequently relating previous analytical evidence to configure an explanatory model (substantive analysis).

For this article, we evidenced the open coding, and its relationships and preliminary groupings, only accounting for categories associated with the axes related to feelings and emotions. This analytical process was accompanied by the advice of an external team of expert researchers in GST, which favored a process of researcher triangulation. This support made possible a series of interpretative adjustments and the improvement of the analytical process.

Table 2:  Selection of categories and codes where feelings and emotions related to Chagas disease are evidenced 

^Source: Own elaboration (2022)

A grouping of codes was constructed that favored the configuration of categories, based on the axes of gender, national origin, territory, and between the experiences of the participants in relation to gestation and donation and Chagas (explicit in the specific objectives). It should be noted that for the purposes of feelings and emotions the gender axes are more especially sensitive if we consider the condition of gestation, however, for the purposes of the differentiations of donation and territory these are coincidental.

Both the Nuremberg Code and the Helsinki Declaration of the World Medical Association, and local provisions that regulate the conditions of access to research funds for access to people in care processes, placed the ethical considerations. The voluntary disposition and confidentiality of the participants' personal information (fictitious identities were assigned) was obtained by means of an informed consent, signed by the individuals.

The project, protocols and instruments were verified by the Ethics Committee of the Servicio Metropolitano Occidente de Salud de Santiago de Chile, and the project adaptations were ratified due to the pandemic context. The research team has access to the documents and transcripts through password.

Results

In this article we highlight the emotions associated with Chagas health care processes, mainly: Feelings related to information, fear, guilt, among others, perceptions and emotions around Chagas.

Discussion

The results of the study allow us to highlight emotions related to fear, sadness, and hopelessness, which are closely associated to the information given to people. These feelings are linked to the experiences of illness or death of family members. Guilt, anger, and responsibility are observed especially in women, because of the possibility of passing on the parasite to offspring. Emotions such as joy and gratitude emerge in the face of negative T.cruzi results.

This study coincides with Ventura García et al., ¹⁹ Ventura García, ²⁰ and Sanmartino et al., ²² especially in the link established between the lack of information about Chagas disease and the feeling of fear of diagnosis by people, especially blood donors and pregnant women. Sadness and feeling bad are recurrent feelings in the testimonies of women and men who received little information during diagnosis. Feelings and emotions such as anguish, surprise, strangeness and worry, and depressive symptomatology, ²⁴ are observed in donors who are unaware of the routes of transmission of the infection.

It is important to emphasize that negative emotions and feelings are also present in the experiences related to children. Coincidentally with Sanmartino, ²² the research identified that guilt is a significant concept for women diagnosed during pregnancy. Joy, as a feeling, emerges when observing a negative result in the children, which differs from guilt and fear in cases in which the result is positive. However, the lack of or little information is again positioned as a relevant aspect in the testimonies of the participants who suspect they have the disease, whether they are blood donors or pregnant women or women of childbearing age; the latter is also observed by Van et al. ³

Most of the feelings and emotions with a negative effect on people are related to the positive diagnosis in pregnant women and blood donors in Chile, due to the lack of information, or to the perceptions of Chagas disease, which translate into emotions such as fear, sadness and guilt predominant in the stories. It should be noted that the lack of knowledge and scarce information regarding the forms of contagion is linked to the fear of death, the belief that this is a disease with no solution or treatment, which coincides with other studies. ^21,25

Clearly, feelings about Chagas disease have a negative impact on timely care and adherence to treatment. Pregnant women in particular feel sad, discouraged and fearful as Chagas disease is seen as a disease without a cure and is directly related to death.

Addressing people's feelings and emotions during diagnosis has an impact on the success of the implementation of Chagas disease prevention and care policies in Chile. ²⁴ It is important to note that feelings such as fear and silence go hand in hand with experiences of stigmatization, as pointed out by Castaldo et al. ²⁷

Timely and clear information to reduce feelings and emotions that hinder adherence to treatment and health follow-up, as Acosta-Romo et al. ³² agree, is essential to humanize care and health care.

Final considerations

The study reaffirms the findings of predecessors research conducted in various countries. There is coincidence in underlining the relevance of making visible the feelings of the people affected by the disease and of the population in general. The feelings expressed speak of the impact of the positive diagnosis and its significance. They show, through their expressions, the discomfort it produces and the complex relationships that occur within families, and in the interaction with the teams and with societies in general. It highlights the place of information and communication about Chagas disease, its significant weight in processes of humanization of health care. Focusing on emotions and feelings helps to ponder the gaps or lack of information that affects people.

Understanding the family, social and community context of people with Chagas disease is fundamental in the development of humanizing strategies, appropriate to the particularities of the population. Communication between the system and people is a determining factor in health processes.

Similarly, it is recommended that these contents be included in the improvement of the implementation of Technical Standard N.º 162, and in its revision. And actions to increase information, diagnosis, treatment and follow-up processes. Likewise, education and training strategies for health personnel would increase feelings of proximity. Empathy is closely related to good practices in health and in Chagas disease.

Understanding the origin of feelings related to diagnosis, information, and significance of this problem, and undoubtedly, the improvement of indicators associated with screening, adherence to treatment and follow-up, not only in the Chilean context, are necessary.

The results and their analysis show the importance of considering the interpretations and intersubjective scopes in a complex health problem such as Chagas disease, advancing in the comprehensive description of feelings, favors illuminating the implementation of the national plan and the technical standard in relation to this specific population. Undoubtedly, improving strategies to inform about the disease, communicating the results of the diagnosis, and about the alternatives associated with health controls and treatment, are fundamental aspects, and contribute to reduce fears, fears of death, feelings related to the implications of the disease, considering feelings as indicators that favor feelings for the positive impact of screening and its universalization.

Direct contact, containment based on active listening and the development of empathy on the part of the health teams are fundamental to stimulate a dignified treatment, based on the axis of health rights. It is essential to advance in social organization, associativism, which also allows to contain, accompany, and legitimize needs in the context of a highly unknown infection and with an important stigma that is reproduced based on ignorance.

Transforming feelings of sadness, disappointment, strangeness, discomfort, concern, guilt, among others, is the task of the health teams, sectoral technicians, and health policy guidelines; we should consider these feelings as evidence of the deficit in the implementation of the policy. Clearly, the enunciation of feelings of tranquility, trust, empathy, respect, will be signs of efficient and effective progress in information, communication, and education about Chagas disease.

Undoubtedly, the transformation of the feeling about Chagas disease must summon the whole community and validate the support of informed and organized peers. Clear, inclusive information will favor interactions without stigmas or mistaken preconceptions. The opportunity that the research opens for us through the understanding of people's feelings allows us to advance in the recognition of others, their needs, differences, social, cultural and territorial contexts. It allows us to build a dialogic, empathic relationship, from an ethics of recognition, of dignified and humanizing treatment, on the recognition of health as a right.