This study was carried out in Madrid (Spain) with patients affected by CD who attended consultations at the Hospital La Paz-Carlos III, health workers caring for patients with CD in three hospitals in the Community of Madrid—Hospital La Paz-Carlos III, Hospital Ramón y Cajal, and Hospital 12 de Octubre—and a CHW employed by the Mundo Sano Foundation.

In the Community of Madrid, CD is managed in both primary and hospital care, with two specialized referral units—Hospital La Paz-Carlos III and Ramón y Cajal—that accept patients without prior referral from primary care. The initial evaluation includes blood tests, PCR, cardiac exams, and digestive studies if symptoms are present. After diagnosis and organ assessment, treatment eligibility is assessed. Treated patients are monitored biweekly for two months, then at 3, 6, and 12 months after completing treatment. Follow-up visits are conducted annually or biennially. Until 2025, the two medicines for treating CD—Benznidazole (Abarax, produced by ELEA Labs in Argentina) and Nifurtimox (Lampit, produced by Bayer)—were only available as imported medications in Spain, dispensed exclusively through the pharmacy for foreign medicines.

The CHW works in multiple settings: once a week at Hospital La Paz-Carlos III to meet and follow up with patients; twice a week at the Bolivian consulate for awareness activities; and during community screenings at health centers, churches, and other events. She also occasionally supports CD patients in other Madrid hospitals upon request, despite the absence of formal agreements with these institutions.

This was a phenomenological study, carried out from October 2021 to February 2025, engaging ethnographic methodology (participant observation), semi-structured interviews (SIs), and focus groups (FGs). In both SIs and FGs, a script was developed covering the following thematic areas:

For healthcare interviews, the script covered the following:

Participants’ inclusion criteria were:

Exclusion criteria were:

To establish a diagnosis of T. cruzi infection following WHO criteria, at least two serological tests detecting different parasite antigens must yield positive results (e.g., ELISA, indirect immunofluorescence, or indirect hemagglutination), thereby confirming the presence of IgG antibodies in the patient’s serum. These tests can be complemented by molecular or direct parasitological diagnostic techniques, such as PCR (8). A patient was considered supported by a CHW if contact was maintained for more than one month. The inclusion criteria for health workers were experience with CD patients, current practice in Madrid, and willingness to participate. Exclusion criteria were lack of CD experience or practicing outside Madrid.

A total of 19 patients were interviewed (13 supported by a CHW and six not supported), along with nine health workers (seven doctors, one nurse, and one nursing assistant) and one CHW. A snowball sampling approach was used to identify individuals. The sample size was determined by the principle of discourse saturation, meaning that interviews continued until no new significant information emerged (26). Saturation was assessed through iterative analysis, to ensure that the categories and themes identified in the discourse were sufficiently developed and well supported by the data. A content analysis was conducted using an abductive approach. The process began with an analytical decomposition of discourse into elementary units, to identify categories that could provide meaning to the social reality studied. This was followed by a synthesis or inductive process to establish connections between the discourse, the situation of patients with CD, and the context in which the CHW operates, thereby constructing its meaning. Validation of discourse interpretation was carried out through two strategies: triangulation, in which two researchers independently analyzed the discourses and compared their respective findings (inter-subjectivity); and participant validation, in which the main findings were discussed with the interviewees.

In addition, a literature review was performed using the following keywords: Chagas and barriers, Chagas and community agent, and Chagas and CHW. Multiple sources of written and oral information were used to triangulate the results and reduce potential bias from any single source.

One set of codes detailed the interviewees’ profiles, while the others covered four key thematic macro areas:

To simplify the analysis, some subcategories of each code were created and included as supporting material.

Two key factors were considered in the analysis:

Data were transcribed manually or using the transcription software Whispercpp. After revision for accuracy, they were imported and analyzed using Altas.ti qualitative data analysis v.25.0.1. Coding was performed by two independent reviewers, who discussed the codes until consensus was reached.

The research was conducted according to the principles of the Declaration of Helsinki, being the participation voluntary. Verbal consent to participate was used rather than written consent. The choice of verbal over written consent was twofold. Firstly, the low level of literacy among some participants made it difficult for them to understand written texts, and they preferred to receive the information orally. Second, due to their irregular migratory status, they were reluctant to sign documents that might place them at risk.

The study protocol received approval from the Ethics Committee for Research with Medicinal Products at the University Hospital La Paz (Spain) on 1 November 2021. HULP: PI-4971. During data processing and analysis of the data, the names of interviewers were removed to maintain their identity confidential.

Results regarding screening, diagnosis, and treatment coverage are presented in Table 1 . Thirteen patients with CD received support from a CHW (seven women and six men). Most were from Bolivia (12), while one was from Ecuador. Their median age was 43.9 years (IQR=38.5–49.3). Their occupations included domestic work (six), service occupations (five), and dentistry (one). One person was unemployed. During childhood, they typically lived in their country of origin in houses made of natural materials (adobe, wood), as reported by 10 individuals. Nine confirmed having seen the triatomine insects known as “vinchuca”: “I lived in an adobe house, and sometimes, when I was young, I saw a strange bug. I believe it (the disease) came from there” (Patient 6).

In terms of diagnosis, nine patients had been diagnosed in Spain and four in their country of origin. Patients tested positive for CD after experiencing symptoms or having a family member with CD (five), during pregnancy (three), during a routine blood test (three), or through blood donation (two). Their most common non-infectious comorbidities were hypercholesterolemia, hyperglycemia, Helicobacter pylori infection, anemia, fatty liver disease, and tumors. The most common infectious comorbidity was strongyloidiasis. Four people reported cardiac symptoms, one reported digestive symptoms, one reported both cardiac and digestive symptoms, and one mentioned symptoms without specifying which ones. Four people reported being asymptomatic. The most common cardiac symptoms were weakness, tachycardia, and fatigue. This information was missing in two interviews. Among these individuals, none had Chagas cardiomyopathy.

In analyzing family history, nine people were born to mothers with CD. Four people were unaware of their mothers’ situation, as explained in this interview: “My mother and that … since they didn’t get tested and they say they’re fine, they don’t want to get tested (Patient 1).” Twelve out of the thirteen interviewees reported having relatives with CD. Only four of the eleven who stated they had children confirmed that they had also tested their children: “My two little ones still need to get tested.—Are they in Bolivia?—Yes, they are” (Patient 15). All participants reported knowing acquaintances with CD.

Regarding knowledge of transmission, twelve individuals identified the bug bite, eight recognized mother-to-child, and three cited blood transfusions. No participant identified organ transplant or laboratory accident as routes of transmission. Knowledge of clinical symptoms was limited to cardiac (seven) and digestive (five) manifestations. Six patients cited direct contact as possible transmission route. Eight patients were aware of the availability of treatment, mentioning its “strong” side effects: “And she (the sister) is the one who did the treatment. It was very intense for three months; it made her lose weight, and my sister’s skin peeled off. She lost quite a bit of weight with the treatment because it was really strong” (Patient 15). Three patients had no knowledge of treatment. Furthermore, eight reported that CD is a incurable disease that could “sleep” or “stop,” especially after receiving treatment: “You have to undergo a long treatment, and it’s like the doctor said, we can only make the disease ‘sleep’” (Patient 5). Their primary sources of information were health workers, especially those working at Hospital La Paz-Carlos III. Four patients reported not receiving adequate information in their country of origin: “They explained a little, but as I said, they didn’t go into much detail” (Patient 1). In eight cases, family or friends also provided information, and five patients reported obtaining it online.

Ten individuals initiated treatment and nine completed it. Among this group, five reported experiencing rashes, itching, and nausea as adverse drug reactions. One person reported hearing loss as an adverse drug reaction, although this has not been previously recognized in the literature as a side effect. Additionally, one person reported no side effects. This information was missing in two interviews. Despite the side effects, patients recommended that their relatives or acquaintances get screened and treated, as evident in 11 interviews: “From there, I called my wife, then my mom. After that, I started calling my sisters, asking them to get tested” (Patient 1).

Patients of Bolivian origin and healthcare professionals with prior knowledge of CD perceived a higher risk of disease. Five participants mentioned knowing someone who had died from CD, and nine reported negative treatment experiences: “Well, someone who had that reaction said their face started itching, and then … I don’t know other things” (Patient 9). In analyzing health beliefs about CD, some patients stated that it causes death (four), only affects those over 40 (three), or could lead to cancer (two). Two interviewees mentioned an antiparasitic drug for animals, Ibome, as a treatment for CD: “And I also said there is another one, called Ibome, to deworm animals, and there is a Chinese doctor who is treating patients that come with that” (Patient 16).

Negative emotions upon CD diagnosis were mentioned in nine interviews. The most frequent emotion was fear, cited by eight patients, while others report worry, distress, disappointment, and surprise. Conversely, three people did not experience any of these negative emotions. This information was missing in one interview.

Delays in diagnosis or treatment were reported by 12 patients: “When I was pregnant they tested me and I found out I had Chagas. But after that I didn’t pay much attention to it” (Patient 2). Similarly, in 12 interviews, patients described comparable attitudes among their relatives or acquaintances. All patients indicated that trusted individuals, including work colleagues or supervisors, knew they were affected by CD.

In terms of access to screening, eight patients reported difficulties in obtaining a diagnosis, particularly in private hospitals, their countries of origin, or during pregnancy. None of the interviews specified which tests were used for screening in these cases. Regarding pathways to diagnosis, five patients were referred from primary care, while eight went directly to hospitals. One interviewee did not provide this information. Patient satisfaction with health professionals’ attitudes varied considerably. Nevertheless, all appreciated the care received at Hospital La Paz-Carlos III: “The doctors treated me very well, I was fine, they did the tests, everything, and I mentioned it, I filled in all the forms with my appointments and I’ve already had all the tests done” (Patient 3). Regarding primary care, three patients reported dissatisfaction.

Regarding the main barriers accessing the healthcare system, the findings are summarized in Table 2 :

Administrative barriers include duplicate diagnostic tests and long waiting times; geographical barriers refer to the long distance to the hospital and to the single pharmacy in Madrid where treatment is dispensed.

The interventions performed by the CHW include assisting patients with appointments and providing information about CD, each cited by eight individuals while emotional and social support and access to medication were mentioned by seven patients each. Regarding treatment adherence, the valuable support of the CHW was cited in four interviews: “And that’s when CHW told me: don’t stop it, if what you’re experiencing is a side effect, don’t stop it” (Patient 2). All patients were very grateful for her care and support: “She is like a guardian angel who just showed up” (Patient 16). This question was not raised in one interview.

To improve the quality of care, patients suggested reducing waiting times and enhancing treatment in primary care. In addition, one patient mentioned that the role of the CHW could be helpful in treating other diseases: “I think it could be used for other treatments, not just CD—like cancers for example” (Patient 2).

The sample of people not supported by a CHW included six patients—five women and one man. Their median age was 48.5 years (IQR=40.0–56.9). Most were from Bolivia (five), with one from Ecuador. Their main occupations were domestic work (three), service (one), and human resources (one). This information was missing in one interview. Screening for CD was carried out in Spain (four), or in their country of origin (two). Within this group, people were diagnosed after blood donation (four), during a routine blood test (one), or through a voluntary screening (one). The most common comorbidity in this group was hypertension. Five people reported cardiac symptoms such as fatigue, tachycardia, hypertension, while one was asymptomatic. None had Chagas cardiomyopathy; their clinical presentation is the indeterminate form. In addition, two people mentioned having lived in rural areas and seeing the insects. This information was missing from the remaining interviews and focus groups. Three patients stated that their mothers also had CD. This information was missing from the other patients. Four patients mentioned having relatives with CD, and in three cases, acquaintances as well. Four patients had children, three of whom were tested, with one receiving a positive diagnosis.

They commonly knew that transmission could occur through bug bites (five) or through mother-to-child transmission (four). Only two identified blood transfusion, and none mentioned organ transplant or laboratory accident. This information was missing from one interviewee. Everyone identified cardiac symptoms of CD, but only three cited digestive symptoms: “It starts in the intestines, then it goes to the heart” (Patient 4). Knowledge of treatment was limited, and only one person mentioned its side effects. Regarding effectiveness, five recognized that taking treatment prevents disease progression: “I took the treatment to keep it sleep” (Patient 11). Their primary source of information was healthcare workers at Hospital La Paz-Carlos III. One person also mentioned searching on the internet. Two individuals started and completed the treatment. One person reported strong side effects, while the other reported none. Four patients had not been treated. Reasons for not seeking treatment included lack of time due to work (one case) and waiting for an appointment (one case). In two cases, this information was not available. Three patients advocated for the diagnosis and treatment of their relatives or acquaintances: “My mother had to be tested, my brother too” (Patient 8).

All participants reported negative feelings when they discovered that they had the disease, such as fear, anger, and sadness. Two patients noted that people in Spain do not know what CD is. They mentioned that this was also the case in Bolivia. At least four participants reported the death of a family member or relative due to CD, while three described negative experiences with treatment: “And I have it. Well, just recently, my sister also told me she has CD and is undergoing treatment there. And that’s it, the treatment … because I’m a little scared, anything can happen” (Patient 13). Regarding beliefs related to CD, four patients expressed the belief that it could be transmitted through direct contact with other people: “Of course, this is normal. If they tell you it’s a strange disease, you think, Uh, let’s see if I get infected…” (Patient 4). Additionally, two patients cited Ibome, an antiparisitic drug for animals, as an effective treatment for CD. All interviewers, except one, had delayed diagnosis or treatment: “For me, it was more like ‘I’m fine,’ so why would I do it?” (Patient 4).

All interviewees shared their diagnosis with close family and friends. Regarding the referral pathway, two were referred from primary care, while the rest went directly to tropical medicine units. All patients were very satisfied with the care received at Hospital La Paz-Carlos III: “Well, yes, if you’re listening, I am very grateful to Hospital Carlos III, to all the staff, who have cared for me and managed my Chagas treatment” (Patient 11). Four patients reported negative experiences with primary care, either related to CD or to other conditions.

The principal barriers to accessing the healthcare system faced by people not supported by a CHW are shown in Table 3 :

Participants in this group could also have contact with the CHW, though not fulfilling criteria for full support (less than a month). Contact included information for five patients, facilitated treatment access for three, assisting one with adherence, and scheduling an appointment for another: “And it was thanks to her that she got me the appointment and everything started moving forward” (Patient 4). Four patients reported being very satisfied with the timely support provided by the CHW: “No, because if it wasn’t for them, for example, I wouldn’t have been able to do it” (Patient 4). Patients recommended that primary care workers improve their knowledge about CD (mentioned by three) and that more research be conducted on treatment options. One patient said: “I don’t know if other labs could invent new treatments. Overcoming those that cause allergies” (Patient 11).

The sample of health workers consisted of nine individuals: seven women (78%) and two men (22%). Their median age was 46.1 years (IQR=39.8–52.3). The group included six internal medicine specialists, one cardiology specialist for CD, one nurse specialized in tropical medicine, and one auxiliary nurse. On average, these professionals had worked with imported pathologies in Spain, particularly CD, for 13.7 years. None had received specific training on CD during their academic studies. Thus, seven pursued a master’s degree or specialization in Tropical Medicine after completing their studies, while four traveled to endemic areas for international cross-border experience. Two professionals reported having no specific training on CD.

According to medical providers, patients were mainly Bolivian women aged 30–50, working in personal care and service industries, and with lower socioeconomic status. In terms of knowledge, all health workers perceived that patients had little knowledge about CD. This knowledge could increase if patients knew someone with the disease or have been referred from a tropical medicine unit: “Yes, they know, they know. I think what my colleagues in tropical medicine do, is essential; they have already explained everything to them (the patients)” (Professional 10).

Five health workers stated that they inform patients the treatment does not fully cure them, and four identified strong adverse drug reactions as a barrier leading to treatment interruption. They pointed out the patients’ primary source of information was their own family members. According to healthcare workers, patients’ reactions to diagnosis were influenced by their prior knowledge of the disease. If patients were already informed about the disease, they recognized it as a fatal disease and experienced fear, as mentioned in four interviews: “…well, you see, it’s very different with patients who come to me from tropical areas, who already know what CD is. They are afraid, very afraid” (Professional 2). When patients lacked knowledge of the disease and did not experience symptoms, they often denied having it, mainly due to stigma: “social stigma of poor people” (Professional 10).

Health providers believed that patients showed good adherence to treatment, as mentioned in four interviews. However, they recommended attending an imported tropical unit in case of any adverse reaction: “As soon as they notice itching on their body or any unusual sensation, we tell them to come here; we immediately suspend the treatment, reassess it, and if necessary, they can start another one” (Professional 4). Regarding referral pathways, health workers noted that patients arrive through primary care, donations, community screenings, or directly requesting an appointment at referral hospitals. Hospital 12 de Octubre, despite not being a specialized referral unit, also allows patients to request an appointment directly, without going through primary care: “In other words, we receive them from anywhere, (even when) and they are not sent by the general practitioner” (Professional 9). Of approximately 16 daily patients seen by the interviewed healthcare professionals, at least five had CD. During the interviews, healthcare workers emphasized their efforts to be flexible with patients, offering telephone consultations and one afternoon session per week to help overcome patients’ work-related restrictions.

From the healthcare workers’ perspective, the most common barriers to accessing the healthcare system faced by patients are summarized in Table 4 .

Beyond these barriers, at least seven health workers mentioned linguistic differences: “They can’t express themselves even though they speak the same language” (Professional 8). In addition, three health providers cited cultural barriers: “There is a different concept of time and a different understanding of preventive health” (Professional 6). All healthcare professionals perceived a good relationship with patients: “They place considerable reliance on you, and you essentially act as their primary care provider” (Professional 3). While three mentioned that patients are grateful, two reported that at first, they may perceive them as somewhat “undisciplined” for not keeping their scheduled appointments—a perception that changes once they become aware of the barriers these patients face: “Sometimes it seems like they are very undisciplined patients, but actually they’re not, it’s just that they face so many obstacles to attend medical follow-ups” (Professional 7).

All healthcare providers recognized the role of the CHW, who works at the Mundo Sano Foundation. In addition, health workers knew of the Association Salud entre Culturas (five) and Médicos del Mundo (one), NGOs that conduct community screenings for CD. Regarding Salud entre Culturas, they highlighted its role in raising awareness about the disease and providing training for health workers in health facilities and universities. Some health workers participated in a working group in Madrid to develop a treatment protocol for CD, with the ai of including CD in primary care.

Service providers consistently highlighted the crucial role of the CHW in appointment management and patient support (cited in all interviews), as well as in providing essential information (mentioned by eight). In addition, one respondent mentioned the CHW’s role in providing emotional support, and three noted their role in improving access to treatment.

Five health workers believed that the CHW influenced patients’ treatment adherence, but two noted that this perception was biased: “Well, I think there’s a significant bias here, right? Maybe the people who aren’t offered support are already capable enough to adhere to the treatment on their own, you know?” (Professional 3). This points to a general tendency of people affected by CD to belong to lower socioeconomic sectors and, therefore, to be less equipped to deal with the complexities of the healthcare system in a migrant setting. Nevertheless, the role of CHWs in improving patient follow-up was acknowledged in seven interviews: “I think they contribute a lot, especially in making sure that patients keep their follow-up appointments” (Professional 5).

Health providers usually asked for the CHW’s support in providing information on CD and managing appointments for patients, who face cultural, administrative and age-related barriers. While most contacted her sporadically, one confirmed reaching out every time a CD diagnosis was made and once treatment began. This healthcare provider identified both moments as critical due to the accumulation of tests and appointments, which were sometimes incompatible with patients’ daily lives: “Because sometimes I feel like we’re here with our lab coats, and the person comes in and it’s a lot of information, because in the first consultation we tell them that they’ve been diagnosed with Chagas, what Chagas is, the tests they need to take, which are many, the treatment option, family screening, how they could have acquired it … And of course, it’s a lot of information” (Professional 8).

The Bolivian origin of the CHW was well received by health workers: “She is Bolivian, like them. It may not seem like much, but she understands, speaks their language and knows their difficulties” (Professional 3). According to all healthcare providers, the CHW role does not exist in the public health system in Madrid. However, they identified other helpers within the healthcare system in Madrid, such as volunteers or social workers, who they said could not fully meet the needs of people with CD: “There are social workers, and in La Paz we have social workers who do an excellent job, but they lack this … For example, a social worker may be very good at their job, but they don’t have that cultural understanding” (Professional 7). All health workers recognized the value of the CHW in reaching the community: “The role of CHW is like what other conditions call peer groups, in quotes, because she is a peer. She can share her experience, be part of the community, and be a success story” (Professional 6).

The main recommendations for improving the care of CD patients, made by five health workers, included community screening and training for health professionals, especially those in primary care. The aim was for primary care doctors to consider CD as a diagnostic option and refer patients to specialized hospitals: “From a support perspective, I think primary care doctors should have the opportunity to do joint sessions with them, both for training and to learn the follow-up procedures” (Professional 9). In addition, two health professionals suggested ensuring treatment availability in hospital pharmacies, not just in the pharmacy for foreign medicines, which is located in central Madrid and open only from 9 h to 14 h from Monday to Friday This limited schedule created an access barrier for both patients and practitioners, may of whom were unaware of how to obtain the medicines.

Other recommendations included reducing bureaucratic barriers for referrals and ensuring adequate health resources for patient care. Another recommedation was to integrate the CHW into the public health system (mentioned by two health workers), with the suggestion that the CHW could also work with patients suffering from other diseases: “Well, I think that … for Chagas patients, for the elderly, and I would say for people like us, because sometimes it’s really difficult with the system” (Professional 3). In one interview, a health worker suggested creating an association for people affected by CD in Madrid.

One CHW was interviewed, a 40-year-old woman of Bolivian origin with a degree as a nursing assistant. She has 10 years experience working with patients with CD. She was diagnosed as positive for CD in 2009 but did not complete the treatment. During her first pregnancy, she informed her gynecologist of her CD status and was referred to a tropical medicine unit, where she completed treatment. Her first child was screened and tested negative for CD. However, during her second pregnancy, despite her medical records, her child was not initially screened, and she had to specifically request it. Her second child also tested negative. This experience fostered her sensibility and solidarity toward others in her situation. Regarding her formal training on CD, she attended several workshops and completed specific CHW training through the School of Public Health in Valencia, which lasted approximately 300 h. The training was based on peer-to-peer learning approaches.

She described the profile of CD patients as Bolivians who grew up in rural areas and knew little about the disease. However, some had a family member who had died from CD. She oserved that some people explicitly refused to receive information about CD, while others spoke about it openly, with acceptance and resignatio their condition. She identified the main barriers faced by patients as work-related demands, administrative challenges, and a lack of awareness among primary health professionals. Additionally, she emphasized the importance of understanding patients’ circumstances: “At first, it may seem like they are not interested, but later, when you talk to the person and see their situation, it becomes understandable” (CHW).

From her perspective, her tasks include managing appointments, providing information, offering emotional and social support, and facilitating access to medication. She estimated that two to three individuals typically require her assistance each week. She also emphasized her role in promoting treatment adherence and conducting patient follow-ups: “Because I understand that sometimes it depends on the start of treatment, right? Because sometimes people let it go, forget about it, and when they want to start again, they’ve lost the papers, the prescription, and they don’t remember what they’re supposed to do” (CHW).

Regarding the barriers she faced within the healthcare system, the absence of an official collaboration agreement with certain facilities limited her formal recognition: “I go, but with the person, though I don’t introduce myself as a health agent because, at the end, if people know that you’re not family or that you’re asking for information—even if you have the person’s consent—there’s not as much trust due to data protection laws I understand that I’m not a well-known figure there” (CHW). At Hospital La Paz–Carlos III, despite the existing agreement, the CHW lacks a dedicated space to carry out her interventions, which hinders confidentiality and the ability to build greater trust with patients. Nevertheless, collaboration with some health providers is strong, particularly with auxiliary nurses who actively refer patients and coordinate efforts. Referrals with other professionals can sometimes be a challenge: “If there was a doctor in charge of reviewing patients, or if during the consultation these patients could be listed to call them or give them information” (CHW).

The CHW perceived a good relationship with patients affected by CD: “I think it’s quite good because people always appreciate having someone to talk to, even if it’s just to listen’ (CHW)”. The fact that she also has a CD has been a way for her to have a connection with patients: “It helps me; it inspires me to carry on because at some point it has affected my family” (CHW).

She recommended improving coordination with healthcare services in general, within the existing collaboration framework of the Madrid Health Service. Additionally, she emphasized the importance of recognizing her role within the healthcare system and suggested that it could be expanded to support other diseases: “The health agent could be integrated into the health system” (CHW). Finally, she repeatedly advocated for the creation of an association for people affected by Chagas in Madrid, similar to those in Murcia (AsaapechaMur) and Valencia (Achacova), with which she collaborates.

The lack of knowledge about CD transmission beyond the vectorial route, cited by 89% of patients, and awareness of cardiac but not digestive symptoms align with findings from other studies (30, 31, 38, 44–46). In contrast, other studies reported a high level of theoretical knowledge about CD (46). This difference could be explained by prior awareness campaigns in the study area or whether it is an officially recognized endemic area, or the existence of a community health intervention program (5). In all cases, misinformation may prevent communities from adopting new health-related preventive behaviors (45). Some studies indicate that a poor understanding of CD is a major barrier to seeking care, especially in non-endemic countries where there are no general health education campaigns related to the disease (44).

Despite limited treatment knowledge, 47% of participants cited trypanocidal treatment side effects, often a barrier to beginning or completing treatment (6, 12, 18, 33, 47). Globally, around 7%–35% of adult patients with CD discontinue treatment due to the inappropriate management of side effects (6). This lack of knowledge about CD was also perceived by most health workers, confirming the absence of comprehensive information in the community and the limited perception of risk and education (30). Many programs in Latin America consider informing, educating, and communicating as strategic and essential for implementing CD community programs (13, 28, 30). This educational strategy should be culturally adapted to achieve true impact (48).

The patients pointed out that their main source of information was the staff at the Hospital La Paz–Carlos III who work in a tropical medicine unit. This may be explained by patients’ perception that primary care workers were not aware of the diagnosis, transmission, and treatment for CD, as also noted by other researchers (13, 30). This aligns with findings from a primary care study, where professionals emphasized that patients from endemic areas do not usually discuss CD with them (15). Conversely, health workers perceived family members as the primary source of information on CD for patients. Despite this discrepancy, patients reported gaining a deeper understanding of the disease after consulting specialists at the hospitals. These typical sources of information on CD—health providers and family members—are also mentioned in other studies (31).

Treatment was taken by 63% (12/19) of patients, both those supported by a CHW and those not supported. Medical opinion is divided on the circumstances in which to recommend treatment, since during the chronic phase is approximately 30%. Some studies indicated that treatment should be offered on an individual basis, and that certain patients may not be considered appropriate candidates due to age, disease severity, or comorbidities (14, 49–51). Physicians must take in account patients’ opinion. Despite 58% reporting side effects, 92% (11/12) completed treatment, demonstrating high adherence. Health workers also noted this strong adherence, linking it to greater disease awareness after appointments with patients. This perception is supported by other authors, who believe that ensuring adequate medical information and health system support will encourage patients to undergo screening and treatment (31).

By contrast, previous studies have shown that more than half of Bolivian patients with CD in Madrid did not begin or complete treatment (44). These differences may be associated with initiatives promoted in Madrid in recent years to address CD, including working groups and research, which have improved awareness of this disease among medical practitioners and patients. Strong adherence to treatment and improved awareness in recent years, could explain why 74% of patients have become advocates for the diagnosis and treatment of others in their community.

The negative feelings, especially fear, expressed by 74% of patients when diagnosed with CD are linked to stereotypical misconceptions, such as it being a rural phenomenon, affecting only the poor, and being inevitably fatal (5, 6, 18, 41, 44, 46, 52–54). The generational transfer of information, occurring only when CD is known by those around, plays an essential role in replicating behaviors and perpetuating these negative emotions (45). Experiences related to someone who has died of the disease or had a negative experience with treatment, both frequently mentioned, also reinforce rather than dispel these misconceptions. In addition, misconceptions about routes of transmission, also reported in other studies, contribute to these negative feelings (45, 55). By contrast, other studies with Bolivians with CD revealed that the disease was perceived as common and even relatively harmless, condition, given that many people are asymptomatic (56, 57). These differences may be explained by the fact that in countries with high endemicity, the presence of the disease may become normalized, with people accepting or resigning to it based on their life circumstances (18).

The fact that 89% denied the disease and delayed treatment may be linked to the stigma associated with CD, as well as to the experiences and health-related beliefs described previously (6). This stigma conveys association with death, misery, rejection, lack of hygiene, and social isolation, and has emerged as a major obstacle to receiving proper medical treatment (13, 15, 45, 52, 54, 58). This explains why most patients shared their CD status only with their closest social circle, as also reported in other studies (44). To address this stigma, some authors recommend involving social workers, mental health professionals, and community actors, including support groups (6).

Difficulties in testing availability were reported by at least 42% of patients who initially received a misdiagnosis, likely due to variability in test reliability, and the sensitivity and specificity of biomarkers, as also mentioned in other studies (14, 39, 52). Additionally, this percentage is similar to the results obtained by Gómez i Prat et al. (48), who reported an underdiagnosed rate of 56.4%. This percentage is lower than the rate in Spain in 2022 by Navarro et al. (36), which was estimated to be approximately 71%.

Healthcare in Spain is provided at two levels: hospitals and primary care facilities, where CD serological tests and treatments are available (54). The fact that 63% of patients went directly to tropical medicine units for screening, bypassing primary care, highlights the lack of CD awareness in primary care, despite its cost-effectiveness and accessibility (4, 6, 12, 13, 15, 33, 36, 44, 47). One possible explanation is that CD is often not included in traditional diagnostic and therapeutic pathways (3, 5, 33, 39). However, the ease of scheduling at hospitals facilitates sending patients directly there. Additionally, under referral pathways in Spain, blood donors and pregnant women diagnosed with CD, are always referred to a hospital facility (15).

The ratio of patients (5/16) with CD seen daily, reported by health workers, highlights CD as the most common imported parasitic infection in Spain, which has been the highest burden of the disease inEurope (11, 36). This underscores the importance of Spain’s membership in the Iberoamerican initiative for the interruption of vertical transmission of Chagas, sponsored by the Secretaria General Iberoamericana (SEGIB) (59).

The lack of specific training in CD during their studies, cited by all healthcare workers, explains why some physicians do not consider CD diagnosis, even among high-risk groups. This perception has been reported by other researchers (15, 54, 55, 57). According to Iglesias-Rus et al. (15) primary care health workers receive training focused on chronic diseases, which are commonly encountered in consultations, rather than on infectious diseases. Furthermore, there is a lack of funding for education and research on CD (14). It should be noted that for CHW, some workshops on CD may not be sufficient, as their training should be tailored to the specific tasks they are expected to perform (48). According to the Pan American Health Organization (PAHO), if these workshops addressed community needs, CHWs were considered to have received adequate training. However, CHW training needs follow up to ensure that knowledge is retained, and strategies to motivate them should also be in place (23, 24). The positive patient–provider relationships at Hospital La Paz-Carlos III reflect both the expertise of healthcare professionals and the support patients receive. This is fundamental for successful healthcare interventions, as noted in other studies (31). In contrast, 37% of patients reported negative experiences with primary care, citing the lack of knowledge and experience in this level already mentioned (15, 39, 54, 60). Training health primary workers and improving their confidence was identified as one of the main goals to be achieved (57, 60).

The most common barriers faced by patients, as reported by all interviewees and organized by prevalence, are:

In addition to these barriers, linguistic and cultural differences identified by health professionals are also mentioned by other authors (4, 33, 39, 46, 53, 63) highlighting the increased communication difficulties despite sharing Spanish as a language. Therefore, linguistic barriers are also influenced by class and educational differences (33). Additionally, the management of chronic diseases should move beyond biomedical approaches, considering patients’ emotional aspects to boost trust and motivation, and to avoid making them feel insecure or labeled as undisciplined (64). Social network barriers affect patients who have migrated to non-endemic countries, leaving them isolated from traditional and emotional support networks (6, 15, 18, 21). Furthermore, patients may hold perspectives on health and disease that differ considerably from the biomedical model dominant in European and US clinical settings (39). This becomes evident in the perspectives of medical providers, who evaluate patients as non-compliant—”undisciplined patients” as mentioned in the quotes above—and as reliant on the medical practitioner. There is an underlying expectation that patients should take responsibility for their own health, and those who fail to do so are labeled “undisciplined.” In Spain, health systems rarely provide support for the social and emotional challenges of living with CD (6).

The barriers faced by patients, particularly linguistic and cultural differences, encourage healthcare workers to collaborate with external resources beyond the public health system to improve service quality. Among these resources, all healthcare workers highlighted the role of the CHW from the Mundo Sano Foundation, likely due to their direct collaboration and the foundation’s active involvement with patients with CD in Spain, Latin America, and the US. The CHW aims to overcome some access barriers by engaging people who have not previously sought care, establishing cultural links, enhancing trust, and contributing to doctor–patient communication (48).

In a number of Spanish regions, such as Barcelona, community-based CD screening interventions are led by public hospitals in collaboration with private foundations or associations, as also reflected in this research (5, 54). It should be noted that, given that worldwide only approximately 10% of CD cases have been diagnosed, it is essential to establish screening protocols, focused primarily on childbearing women but also on all migrants from endemic areas, within primary health care in non-endemic countries such as Spain (11, 18).

Considering the role of the CHW, both patients and healthcare professionals agree on its key values. The most common tasks included providing information, managing appointments, and supporting patients, all regarded as essential for the comprehensive management of CD. These tasks are similar to those described by WHO (25) and other authors, including identifying individuals and families at risk and carrying out basic interventions (24, 48, 65, 66). CHW activities vary between rural and urban areas, depending on whether they work closely with healthcare services. However, in all scenarios, the CHW requires close support and follow-up from health services, together with the collaboration of other social actors (23).

This multidisciplinary approach is essential for improving patient follow-up (5, 66). Although there was a group of individuals identified as not supported by a CHW, analysis of the interviews shows that once a patient becomes familiar with the CHW, they tend to seek occasional support to manage appointments, access treatment, or receive counseling. They benefited from the same interventions as those supported by a CHW.

Upon analyzing the patients who started treatment, a noticeable difference emerges between those supported by a CHW (69%) and those without support (33.3%). Although support is not necessary to start treatment, considering the potential bias noted by healthcare workers—who pointed out that supported patients are selected due to challenges—this highlights that for patients facing difficulties, support could make the difference between starting and not starting the treatment. These results should be interpreted considering that, in some cases, treatment may not be indicated by certain medical practitioners. Additionally, a possible explanation could be the lack of seamless integration of the CHW into the healthcare system, meaning that support during treatment (as a clinical concern) falls outside the scope of her work and depends on having a good relationship with clinical staff. Regarding follow-up adherence, the role of the CHW is clearer and indispensable, as highlighted by both patients and healthcare workers. Having made the necessary clarifications regarding the limitations of these observations, we nonetheless stress the relevance of the data emerging from this qualitative study, making a case for the importance of actors such as CHWs, who act as bridges between the healthcare system and the community.

Furthermore, in other settings, the interventions carried out by CHWs, especially at the community level, could enhance access to diagnosis (5, 7). Culturally tailored interventions—the adaptation of study designs, materials, and other components to reflect the cultural needs and preferences of a population—are most effective in increasing access to diagnosis and treatment (5, 38). These include the informal dissemination of information, and screening at community events, clubs, social organizations, waiting rooms, or embassies (52, 67).

Although healthcare providers recognize the key role of the CHW in supporting patients with CD, the process for requesting assistance remains unclear. This perception is also shared by the CHW. This may be because the CHW is not part of the public health system and there is no physical space at Hospital La Paz-Carlos III to locate her, despite the existing agreement. Some studies have also highlighted these barriers faced by CHWs, leading to the undervaluation of human capital and financial resources (24, 25). In the Community of Barcelona, the CHW role has been integrated into the public healthcare system, improving TB treatment adherence and facilitating CD diagnosis, among other outcomes (5, 68). The Bolivian origin of the CHW, who has also been diagnosed with CD, is crucial for building trust with patients as a peer counselor. Her origin also enables her to act as a cultural mediator, with an understanding of immigration and multicultural contexts.

Her strong relationship with patients, as recognized by healthcare providers and patients themselves, is based on shared experiences and histories, non-verbal communication skills, and her understanding of the Spanish context, which gives her prestige among peers. As noted by Goméz i Prat et al. (48), recruiting and selecting the most appropriate person for the CHW role is essential to ensure the sustainability, acceptability, and success of a community health strategy.

The nature of the study—a qualitative phenomenological design—prioritized depth over quantity of data. This imposes limitations on the capacity to generalize from what is a relatively small sample, determined by the network capacity of snowball sampling. However, given that the value of these data lies in its depth and multiplicity of meanings, and that it has been contextualized through comparative analysis of similar studies, the contribution it provides to understanding people’s barriers to healthcare, the role of the CHW, and healthcare providers’ perceptions of its merit are valuable contributions.

The key recommendations emerging from SIs and FGs include:

Our study has several limitations. Given its qualitative nature, participants were not randomly selected from the population, meaning the results may not be generalizable to all patients with CD. Additionally, there may have been a classification bias due to the referral process used, which could have led to differences in the profiles of patients who were accompanied by a CHW and those who were not. Recruiting people with CD, particularly those without CHW support, was challenging as the target population faced significant barriers, especially a lack of accurate information about the disease. In terms of the impact of the CHW on the initiation and adherence to treatment, the sample size was relatively small, and the supported and unsupported patients were not monitored for the same duration. Ultimately, further research is needed to gain a deeper understanding of these points.