Adversity and Resilience: The Stories of People Living With HIV in Ecuador

Abstract

People living with HIV (PLHIV) in Ecuador experience challenges including discrimination, violence, and limited access to healthcare, which impacts their mental health and well-being. However, research shows that PLHIV also rely on social resources to foster resilience. In the Ecuadorian context, there is no literature exploring these narratives, which results in a lack of qualitative data to improve the reality of PLHIV in the country. To gain a deeper understanding of these stories, 15 semi-structured interviews were undertaken (15 verbatim hours) within the context of a peer- and professional-led support group for PLHIV and were analyzed through a thematic approach based on Skovdal and Daniel’s conceptual framework on resilience and adversity. Findings suggest that PLHIV face multifaceted challenges across the home, community, and political-economy spheres. Families and communities can elicit pain and fear, leading individuals to avoid discussing their diagnosis due to ongoing rejection. Further, discrimination perpetuated within the public health sector, as well as societal violence, exacerbates adversity. Nevertheless, participants stress the indispensable role of family support, community networks, and accessible healthcare in fostering resilience. Specifically, support, emotional reassurance, and willingness to learn enabled PLHIV to build resilience. These findings emphasize the need for approaches that counter discrimination, enhance well-being, ensure integral and intersectional healthcare access, and promote knowledge around HIV.

Porque los antirretrovirales existen hace más de 20f años

porque las redes de personas con VIH existen

porque defienden nuestros derechos

porque nos abrazan

porque nos aman

porque hacemos comunidades

y nos deben respeto. (Guerrero, 2023, p. 47) ¹

Because antiretrovirals have existed more than 20 years,

because networks of people with HIV exist,

because they defend our rights,

because they embrace us,

because they love us,

because we make communities

and they owe us respect. (Guerrero, 2023, p. 47)

Introduction

HIV-related stigma and discrimination are the main sources of psychological distress and mental health challenges for people living with HIV (PLHIV) worldwide (Miller et al., 2016; Rendina et al., 2018; Rzeszutek et al., 2021). Stigma manifests in two primary forms: public stigma and self-stigma (Asrina et al., 2023). Mendez-Lopez et al. (2024) found that public stigma (i.e., stigma by the general population) was present in 64 low- and middle-income countries, with an average prevalence rate of 42%. Self-stigma is similarly widespread; for example, in a U.S. study by Baugher et al. (2017), 79% of participants reported at least one self-stigmatizing belief. In a study conducted in the Dominican Republic, all participants reported feelings of shame, guilt, and depression regarding their diagnosis (Celeste-Villalvir et al., 2023).

HIV stigma and discrimination do not affect all groups equally. Intersectional research indicates different social groups experience varying levels and kinds of stigma (Jackson-Best & Edwards, 2018). Women, for example, often exhibit higher levels of internalized stigma and depression, particularly when HIV is associated with family concerns as well as the shame associated with acquiring HIV from unfaithful husbands (Drumright et al., 2024; Fauk et al., 2022; Sommer & Barroso, 2023).

Across different countries, non-heterosexual patients report higher levels of both public and self-stigma driven by perceptions linking their HIV status to sexual orientation (Drumright et al., 2024; Fauk et al., 2021; Rendina et al., 2018). Transgender PLHIV experience significant stigma, particularly in healthcare, often confronting obstacles such as sharing their gender identity in a potentially unsafe environment, encountering insensitivity from healthcare providers, and navigating HIV services that lack inclusivity (de Villiers et al., 2020; Tun et al., 2022).

These experiences of stigma are not isolated; they interact with systemic barriers that further compound the challenges faced by PLHIV. Limited healthcare access, unspecialized HIV care, high diagnostic and treatment costs, and reduced hospital visits due to anticipated stigma and discrimination adversely affect their mental health and life experiences (Beckman et al., 2016; Bran-Piedrahita et al., 2017; Guarate Coronado & Cando Chango, 2021). Globally, depressive symptoms are the most common mental health issue among PLHIV (14%–78%), followed by anxiety disorders (15%), post-traumatic stress disorder (28%), and suicidal ideation (22%), with higher rates among marginalized groups (Hoare et al., 2021; Pelton et al., 2021; Remien et al., 2019; Tang et al., 2020).

In Ecuador, these global patterns of stigma and healthcare disparities are echoed. According to Ministerio Ecuatoriano de Salud Pública (2024), there were 48,924 HIV-positive people in 2022. However, this statistic is likely an underestimate, as it assessed that approximately 92% of PLHIV in the country know their diagnosis. Around 85% of these individuals are being treated with antiretroviral therapy (ART), while the remaining 15% lack proper access to treatment. This can be associated with factors such as ART shortages in public hospitals and mistrust of healthcare workers stemming from fear of discrimination (Esparza, 2020).

Beyond healthcare barriers, PLHIV in Ecuador endure daily violence and pervasive public stigma. Discrimination against them is often culturally normalized, exacerbating their marginalization (Beckman et al., 2016; Casapulla et al., 2022). For instance, a study by The Joint United Nations Programme on HIV/AIDS (UNAIDS) (2018) reported that 36.9% of Ecuadorians would not buy groceries from PLHIV, and 26.8% believed HIV-positive children should not attend school. Additionally, around 30%–34% of rural residents viewed PLHIV as responsible for their diagnosis, and about 20% felt uncomfortable being near them in workplaces or doctor’s offices (Casapulla et al., 2022).

These stigmas contribute to higher rates of workplace and academic discrimination against PLHIV in Ecuador (Guarate Coronado & Cando Chango, 2021). A study by Cabezas et al. (2013) found that 46.6% of Ecuadorian company workers were ignorant about HIV transmission, and 32% did not understand preventive measures. Disinformation in the workplace exacerbates job discrimination with 16% of PLHIV being denied jobs or losing them due to their HIV status, and 43% reporting unemployment (Vargas Sandoval & Cisneros Dávila, 2023).

While stigma in the workplace and healthcare system is certainly a concern for PLHIV, stigma from family and friends also plays a significant role. Research has found that many PLHIV in Ecuador believe their condition will result in discrimination and isolation, leading to a pervasive fear of rejection and abandonment, particularly if they disclose their diagnosis (Beckman et al., 2016; Evangeli & Wroe, 2017). This widespread social stigma exacerbates their struggles, with approximately 40% of PLHIV in Ecuador experiencing some degree of depression (Checa et al., 2021).

Recent research, however, shifts the narrative from depicting PLHIV as passive victims to recognizing their active engagement in strategies—both additive, such as adopting new activities and roles, and subtractive, such as discontinuing behaviors detrimental to their health and well-being—to navigate HIV-related challenges (Fauk et al., 2022; Jackson-Best & Edwards, 2018). Recent research further explores how PLHIV build resilience and overcome adversity by leveraging individual, interpersonal, and institutional resources. Ungar and Theron (2020) emphasize that resilience is not solely an individual characteristic but is shaped by the interaction of multiple systems, highlighting the pivotal role of social and ecological systems in mediating both adversity and resilience.

Image 1. “Resilience”: Illustration conceptualized ² by the research team illustrated by Sebastián Cadena.

Conceptual Framework

Skovdal and Daniel (2012) have been at the forefront of studying resilience in PLHIV in the Global South, proposing that when social enablers like solidarity, support networks, social participation, and faith exist, PLHIV use their agency to access community pathways that allow them to overcome adversity and build resilience (Skovdal & Daniel, 2012). This study adapts their work on resilience, moving beyond the conventional individualistic interpretations to acknowledge the socio-ecological contexts that promote the resilience of PLHIV in the Global South, where resilience is often experienced in a communal context (Skovdal & Daniel, 2012; Zamora-Moncayo et al., 2021).

Skovdal and Daniel’s resilience model, which we adapted for our research, conceptualizes three expanding circles: the home and family, the community, and the political economy, emphasizing the interactions among these levels. The innermost circle, the home and family, includes family members and dynamics. The community circle encompasses social spaces, peer and activist groups, and relationships with friends. The outermost circle involves the political economy and government services, including access to ART and policies that assist individuals in coping with hardship. This adapted framework has also been employed to categorize adverse experiences (Figure 1).

Figure 1.

Adapted framework of adversity and resilience based on Skovdal and Daniel (2012).

Through the use of this adapted framework, our study aims to investigate the experiences of adversity and resilience among PLHIV in Ecuador. We seek a comprehensive understanding of their lived experiences of adversity, focusing particularly on the coping strategies they use to navigate and overcome these challenges, especially those arising from structural and sociopolitical contexts. Therefore, our central research question is: What are the resilience and adversity experiences of PLHIV in Ecuador?

To the best of our knowledge, this is the first study in Ecuador to focus specifically on the narratives and experiences of resilience and adversity of PLHIV. The absence of prior research in this particular area highlights a significant knowledge gap that this study aims to contribute to filling.

Methods

Setting

The study was conducted in Ecuador, a country with laws protecting the dignity and rights of PLHIV (Coalición Ecuatoriana de Personas que Viven con VIH, 2015) However, despite these legal safeguards, PLHIV often face stigma and discrimination, even within state institutions like the public healthcare system (Beckman et al., 2016; Casapulla et al., 2022; Đào et al., 2019). The Ecuadorian government, with the help of nonprofits, provides free access to Pre-Exposure Prophylaxis (PrEP), Post-Exposure Prophylaxis (PEP), and Antiretroviral Therapy (ART) at various public medical facilities (Coalición Ecuatoriana de Personas que Viven con VIH, 2015; Corporación Kimirina, 2022). Nevertheless, this study took place during the COVID-19 pandemic (October 2021–July 2022), a period marked by medication shortages and delays in HIV care, leading to violations of rights related to free and timely access to testing, counseling, and medication (Esparza, 2020).

Design

This study was born out of a larger, ongoing participatory research project focused solely on evaluating the impact of an eight-session therapeutic group intervention on the well-being of PLHIV in Ecuador, referred to hereafter as VIHvir Support Groups. To assess the impact of the VIHvir Support Groups, interviews were conducted before and after the eight sessions to explore various aspects of participants’ lives and well-being. Moreover, due to the participatory nature of the larger study, now referred to as VIHvir Evaluation, yet to be published, PLHIV actively contributed to key aspects of the research process, including piloting interviews and training interviewers.

During the initial reading of the data, we identified valuable information that allowed us to assess the VIHvir Support Group’s impact and also unearthed narratives that fell outside of the scope of VIHvir Evaluation’s research objectives, but were nevertheless valuable, particularly complex narratives of adversity and resilience. In an effort to honor these important stories from such an understudied population, which otherwise might have been left untold, and to contribute to closing the research gap around PLHIV in Ecuador, the research team decided to showcase these stories in this study.

Sample and Recruitment

We aimed to recruit PLHIV through two campaigns: one on social media (Facebook, X, and Instagram) and another by contacting organizations that work with PLHIV in Ecuador. The first round of recruitment occurred in November 2021 and the second in June 2022. Participants enrolled by completing a Google Form for consent and demographic information. Afterward, participants were individually contacted via WhatsApp to schedule a 60-minute Zoom interview. Some individuals chose not to engage in the VIHvir Evaluation process but continued with the VIHvir Support Groups. No participants dropped out of the study.

Our sample included 15 PLHIV with diverse gender identities and sexual orientations. Among them, one participant was non-binary, three were women (including one trans woman), and eleven were men, most of whom were gay. All female participants reported being heterosexual. The ages of participants varied, though all were over the minimum age requirement of 18. To ensure confidentiality and privacy, all participant names have been pseudonymized (see Table 1 for participants’ demographics).

Table 1.

Anonymity Table Demographics.

Participant Number	Fictitious Name	Pronouns	Age
P1	Santiago	He/him	33
P2	Ignacio	He/him	34
P4	Felipe	He/him	28
P5	Mateo	He/him	59
P6	Pablo	He/him	33
P7	David	He/him	26
P8	Alfonso	He/him	24
P9	Ariel	They/them	32
P12	César	He/him	46
P13	Pamela	She/her	57
P14	Emilio	He/him	24
P15	Ricardo	He/him	36
P18	Sofía	She/her	49
P19	Rafael	He/him	49
P20	Carmen	She/her	49

Since the study was born out from the broader research project: VIHvir Evaluation, the inclusion and exclusion criteria were aligned with it. The inclusion criteria required participants to (a) have an HIV diagnosis, (b) be interested in participating in the study, (c) ensure a reliable internet connection for both the interview and the VIHvir Support Groups, (d) be between the ages of 18 and 65, and (e) reside in Ecuador.

Exclusion criteria included (a) inability to provide consent due to physical or mental conditions, (b) being under 18 or over 65 years of age, and (c) exhibiting severe symptoms of anxiety, depression, or being at risk of suicide as determined by standardized assessments using the Beck Anxiety Inventory (BAI) and Beck Depression Inventory (BDI-II). Participants who had symptoms of severe anxiety, depression, or suicide risk were referred to accessible individual psychotherapy services. This referral ensured that they received appropriate care alongside the VIHvir Support Group, as the intervention was not designed to address severe underlying mental health conditions.

Data Collection

Data collection took place between October 2021 and July 2022 and was carried out by researchers with professional training in psychology (ECZ-M, BH-D, and JFC) and three research assistants. It is important to note that although none of the authors live with HIV, they have direct experiences related to the condition, through friends or family members.

A semi-structured interview guide (see Supplemental data for full Interview Guide) explored participants’ experiences with psychosocial well-being, social connections, their relationship with their HIV status, treatment adherence, and their perceived quality of life.

Due to the constraints posed by the COVID-19 pandemic, interviews were conducted virtually in Spanish, the participants’ native language. This approach allowed individuals residing outside of Quito, where the researchers were based, to participate. Additionally, virtual interviews provided a safe and confidential environment, ensuring the participants’ privacy and anonymity throughout the research process. All participants provided a written informed consent, and data were anonymized in recordings, transcripts, and reports. Fifteen interviews were conducted, resulting in approximately 15 hours of verbatim transcription.

Data Analysis

Our study employed qualitative analysis to delve into the personal narratives of PLHIV in Ecuador. We chose an abductive approach due to its ability to facilitate an exploratory and iterative examination of data. An abductive approach engages with the data, both at an empirical level and with theoretical frameworks, allowing researchers to remain open to unexpected findings while using frameworks to guide the research. This approach is particularly effective in capturing the nuanced interplay between individuals’ experiences and broader theoretical insights, making it well-suited for investigating the complex phenomena of resilience and adversity (Thompson, 2022).

Within the abductive approach, we employed Gale et al.’s (2013) framework method to organize and code the data. Given that all participants and researchers were Spanish speakers, the analysis was conducted in Spanish. By following the steps detailed in Gale’s work, we identified key themes and patterns that arose from familiarization with the data, collective meeting with the team, and professional and academic criteria of the researchers. These overarching themes were adversity and resilience.

Furthermore, to create the coding matrix for the Gale framework method, we drew from Skovdal and Daniel’s (2012) work and created subcategories within the themes of resilience and adversity. We integrated adverse experiences within the same adapted framework for resilience to reflect the simultaneous occurrence of adversity and resilience. Separating these experiences would have oversimplified the complexity of how individuals navigate and respond to adversities while building resilience.

This method allowed us to parse our participants’ experiences of adversity and resilience into the three social ecologies proposed by Skovdal and Daniel (2012): family, community, and political economy. Guided by these preliminary categories, we then identified more concrete codes that encompassed the resources participants used for their resilience journey and the specific stories of adversities they had experienced. Specifically, we established 24 codes (see Tables 2 and 3 for details on the coding framework and Supplemental data for full coding matrix). Throughout this process, Dedoose software was used to assist in organizing the data and ensuring systematic analysis.

Table 2.

Adversity Coding Framework.

Broader Theme	Categories (Social Ecologies)	Codes
Adversities in the lived experiences of PLHIV	Adversities within the home and family environment	Lack of social support from family members around the HIV diagnosis
		Stigma and discrimination due to the HIV diagnosis
		Not being able to share their HIV diagnosis
	Adversities found at a community level	Not knowing other PLHIV and/or not having peer support
		Lack of knowledge and information about HIV
		Rupture of affective social ties
		Stigma and discrimination experienced by PLHIV
	Adversities within the political-economy context	Hardships accessing the public healthcare system for HIV testing and treatment
		Not having financial resources to access private HIV treatment
		Structural violence experienced by PLHIV (neglect in the workplace, discrimination in the healthcare system)
	Consequences of adversities in emotional well-being of PLHIV	Mental health problems
		Self-stigma

Table 3.

Resilience Coding Framework.

Broader Theme	Categories (Social Ecologies)	Subcategories (Social Enablers)	Codes (Resources)
Pathways to resilience in PLHIV	Family and home environment	Social network	Social/emotional support regarding HIV from family members
			Knowledge of HIV
			Healthy and positive relationships with family members
		Social solidarity	Activism and volunteering
			Participation in support groups for PLHIV
		Social network	Support from friends around HIV
			Peer relationships and support
		Access to information	Continuous learning about HIV
		Access to services/infrastructure that fosters health	Access to health services (counselors, doctors)
			Access to ART for reaching undetectable status

Lastly, saturation was determined when no new themes emerged from the data. To ensure consistency and reliability, double coding was performed on 100% of the data by the research team. Quotes were translated into English and verified for accuracy by a licensed clinical social worker fluent in both English and Spanish.

Ethics Statement

The Human Research Ethics Committee (CEISH-USFQ) granted ethical approval for this study (reference number P21-106M).

All participants were given two written informed consents: one for their participation in the study and one for the storage and future use of their data. The consents stipulated that their participation was voluntary and that they could withdraw their consent at any time. To ensure the prevention of asymmetrical relations between participants and researchers, no economic compensation was provided for participation in this study.

Results

Our participants shared detailed and varied experiences of adversities and resilience. To better capture, understand, and organize the complexities in their stories, as stated before, we used an adaptation of a critical resilience framework proposed by Skovdal and Daniel (2012), encompassing three social ecologies: Home and Family, Community, and Political Economy. These social spheres were characterized by social enablers (see Table 3) and resources which facilitated or hindered the participants’ experiences of resilience. Finally, we also identified a fourth theme, which captures the emotional impact of adversities reported by our participants (Figure 2).

Figure 2.

Results overview: Adversities and resilience in PLHIV based on Skovdal and Daniel (2012).

Adversity

Home and Family Social Ecology

Most of the participants described their homes as invalidating spaces where they suffered various forms of violence. Many felt unable to share their diagnosis with their family, despite wanting to do so. An example of this is portrayed in Emilio’s story:

Sure, but I don’t know how they would react, especially my mother […]. Though I wish I could talk to someone at times, because sometimes I do need to talk, I need to talk and vent. But I don't have that. I mean, I trust my aunt, but it's very difficult for me to talk to her about it. It feels very complicated for me.

Furthermore, participants who deliberately chose not to disclose their HIV status still faced stigma within their families. Awareness of a family’s violent, abusive, or severe reaction toward other socially stigmatized identities such as sexual orientation made individuals more reluctant to discuss their health condition. In this context, anticipating abuse and choosing not to share became a protective strategy. Sofía’s quote vividly illustrates this dynamic:

[…] My dad doesn't know about it, because he is from another generation […]. When he talks about someone with HIV, he says, “that’s only for faggots and prostitutes.” So, you can imagine, that’s my barrier. If I were to say anything to him, he would slap me in the face, so I’d rather not. I’d rather not, because he might have a stroke and end up in the hospital, […] and he would blame me and say, “I'm going to die because of you, get away from me” or he’d kick me out of the house. That scares me, it paralyzes me […].

Even when family members knew about the diagnosis, they offered little to no support. They rarely asked how participants were managing their diagnosis or medication. Few family members took enough interest to participate in the medical processes and to accompany the participants to their appointments, leaving them to fend for themselves.

Participants shared numerous experiences of rejection by family members directly related to their HIV diagnosis. While this was a common experience among participants, it is essential to recognize that these families may reflect the broader societal context in Ecuador where HIV disinformation and stigma are still prevalent. Pablo recalls an episode of discrimination by his father:

[…] It was awful. My dad said, “So what happened? Who were you with?” And, after I told him, he responded, “From now on, your clothes will be washed on the terrace. Your plate and cup will be stored separately. You will bathe in a separate bathroom” […] My father didn’t want to know anything about me after that.

In capturing and presenting these stories, it is the authors’ intention to reveal the interplay between the home and family social ecology and the broader communal and political social ecologies by which they are influenced.

Community Social Ecology

Participants frequently reported experiencing a loss of social connections after sharing their HIV diagnosis with friends or partners. These losses were prevalent in their narratives. The awareness of such social consequences may contribute to their decision not to disclose their diagnosis to their communities, thereby exacerbating experiences of isolation and loneliness. Felipe illustrates this dynamic, as he describes being left by his partner after sharing his diagnosis:

The hardest part was telling my partner, […] when I told him he said, “You understand that we can't keep dating, right?” and I was shocked. I couldn’t say anything except, “Wow.” He was the first person that I had told […] and with time I realized that his reaction marked me, because I told myself that was how all reactions were going to be […].

Participants also reported a pervasive fear of everyday discrimination due to potential rejection. This apprehension often led them to avoid sexual or romantic interactions, thereby depriving them of essential human connections and contributing to a sense of isolation. Ariel recalls:

A fear that all PLHIV have is related to love; I mean, finding someone who loves me for all that I am. It’s very difficult. I feel that in the end when you have the diagnosis you run the risk of being rejected […] I prefer to put up walls and not involve myself emotionally.

Some participants also reported difficulties in locating support groups as these were scarce in their home cities and mostly concentrated in major cities in Ecuador. This finding was particularly problematic for those residing in smaller cities or villages, since it directly affected their options to engage in communal resilience. Similarly, finding a support group was especially difficult for a transgender participant, as existing groups often lacked inclusivity around gender diversity. This gap frequently resulted in feelings of isolation, uncertainty, and, in some cases, exacerbated self-stigma. Pamela’s story illustrates this experience from the lens of a trans woman:

What I was critiquing just now is that, although there are support groups […] they still discriminate against trans people […]. It seems that people tend to focus more, as always, on gay men or other people from their community. I haven’t seen support groups for trans people specifically […].

Our results indicate that adversities are found not only in external sociocultural contexts communities but also within communities that participants expected to be welcoming. Pamela’s stories emphasize this: even though PLHIV may share their diagnoses and related experiences, their struggles may vary significantly depending on their different identities which intersect with their HIV status.

A consistent adversity reported by participants was the lack of knowledge about HIV, particularly at the time of their initial diagnosis. Misinformation about HIV in families and communities led to more intense reactions to the diagnosis. However, this situation improved as participants gained access to accurate information about it. Ricardo’s experience exemplifies this trajectory:

There is still this stigma, this taboo in our society and I include myself in it. At the beginning, when they told me about my diagnosis, I thought, “my God, I'm going to die, I’m going to die.” But once you educate yourself, you understand it better and it goes from being a serious disease to a condition.

Misinformation was not only encountered on a personal level but also in social settings such as the workplace. Pamela mentioned that a colleague discovered her HIV status, which nearly led to the loss of her job:

[…] There was a person at my workplace who didn’t want me to continue working there, because she had found out I had an infectious disease, and wanted to know what it was. […] I talked with a psychologist at my hospital, and he told me that they couldn’t ask [about my diagnosis] or tell me to leave due to my diagnosis, though, my coworker, she paid to get the exam to confirm my diagnosis and with that exam she planned to go to the Ministry to request that I be transferred or fired.

These personal stories about the impact of misinformation and stigma reflect the broader societal challenges that exist in the political-economy sphere as well. In particular, systemic barriers and violence embedded in institutional structures significantly impacted participants’ well-being.

Political-Economy Social Ecology

The political-economy sphere was plagued with adverse experiences which, according to our analysis, appear to have had the most significant impact on participants’ well-being. One prominent challenge reported by participants was experiencing adversity in the healthcare context even from the beginning of their HIV journey. They described instances where healthcare workers displayed judgmental attitudes and in certain cases held them responsible for their diagnosis. For example, Pablo shared his experience:

When I was diagnosed it was awful, because they gave me the news abruptly, and they did not give me a chance to adjust to it.

Experiences of discrimination in the healthcare sector were prevalent among the majority of participants, particularly those utilizing public health services. Conversely, participants with access to private healthcare reported significantly reduced waiting times and more rapid access to medication.

Pamela’s experience highlights the additional barriers faced by PLHIV with intersecting marginalized identities, in her case, being trans and living with HIV. Pamela’s experience underscores the vital need to address gaps in treatment for people with diverse identities.

When I was diagnosed with HIV, I was honest with my doctor, and told him that I take hormones [hormone replacement therapy (HRT) for trans women]. But the doctor prohibited me from continuing … Dr. X used scare tactics on me. He forces you to stop taking HRT, because, according to him, he wasn’t going to waste his time with me if I was taking things he didn’t agree with. He said, “It is better if I give you a gun, and you just kill yourself, because I do not have the time to attend you if you don't take the right medication and do take HRT.

Participants reported a lack of control over these adversities, deepening their sense of hopelessness. For example, a recurrent experience was not being able to afford private ART, which was exacerbated by Ecuador’s ART shortages, particularly during the height of the pandemic in 2020. This led many PLHIV to be forced to buy the treatment themselves. However, as César shares, some people cannot afford the treatment:

The most difficult thing is when the medicine runs out […]. Treatment is very expensive, it’s not cheap, and it’s not always available. So, the fact is that being able to get it, and get it fast is not something that is within everyone’s reach […].

Not being able to access ART consistently affected participants’ physical and mental health. And even when they had access to ART in public hospitals, other adversities within the healthcare system persisted. Many reported difficulties booking control appointments and having to wait in line for hours outside the hospital early in the morning without knowing when they would be attended by a doctor:

They called me and said to come to the hospital, which was far away from my home. I took all of the papers I needed with me, but still, they didn’t let me into the hospital. I returned to my place angrier than ever at the system because it does nothing for us. It has always been fatal. (Pablo)

As illustrated by the experience PLHIV faced in the political-economy ecology, the service gaps within healthcare, especially within the public system where most of our participants received their care, significantly impacted their well-being. Moreover, the following quote underscores the need for healthcare to move beyond strictly biomedical approaches and adopt a more integrative and humane treatment. Mateo expressed his frustration with this limitation:

It's very frustrating. It makes me very angry, because there’s not a proper healthcare service. It's not enough guaranteeing that you take your medication [...], feedback and recommendations from your doctors are also needed.

Additionally, some of the participants could not initiate their ART in time. Their waiting time varied depending on several factors including the year of their diagnosis, the clinical guide used to inform treatment, and the general state of the public healthcare system. In the case of Ignacio, he waited as long as 2 years to begin treatment:

During the COVID-19 pandemic, hospitals and access to medicine was chaotic, not only for those of us who have the diagnosis, but also for patients with other catastrophic diseases. The main issue was the corruption around accessing medicines. For many months I’d arrived at the hospital at dawn, on the day the medication was supposed to be there, but it was not.

A lot of interviewees reported being in a state of constant uncertainty and distress regarding their diagnosis and health, due to the quality and quantity of the available treatments in Ecuador’s public hospitals. This inability to rely on the services provided by the state led to a persistent sense of mistrust of the healthcare system.

Santiago shares his thoughts on the quality of treatment available:

It is hard for me to know that there are better medications out there, but that I am not going to find them in this country. I have already talked about this with three infectious disease doctors, and they tell me: “It's either this medicine or you have to take 4 pills [...] Here [in Ecuador] you don’t have any other option.

Emotional Impact of Adversities

When examining themes that arose throughout the adverse experiences of participants, shame and guilt were the predominant emotions experienced by most of the participants throughout the various stages of learning about their HIV diagnosis. Many reported that they thought they were too careless and reckless, and that in some way they got what they deserved, as if the HIV diagnosis was some kind of lesson or punishment. These emotions did not arise in isolation but were likely the complex result of their experiences of stigma and discrimination within their families, communities, and the healthcare system that participants internalized even prior to receiving the diagnosis. For instance, Ariel shared:

It was very hard for me to tell others about what happened because I was ashamed. I felt like it was my fault. No, more than that, for a long time, I thought I had brought it on myself.

Self-stigma and hopelessness often led participants to experience significant mental distress, sometimes leading to suicidal ideation. Emilio recalls:

Over the course of the month before I returned [to the hospital] to pick up my medicine I had a very hard time. I didn’t know what to say, I didn’t know what to do, I didn’t know whether to eat or not to eat, whether to have contact with others. I became quite bitter in that month, and a thousand things came into my mind. There was a specific place in my city; it was a bridge and I used to always sit there. I would question myself whether “Should I throw myself off?” because I couldn't take it anymore. I thought to myself that I was a disappointment to my family and that I had brought this problem upon myself. I used to think I was a total mess.

Although unique, we were able to identify a specific experience of emotional distress involving a cisgender woman with HIV. In addition to the presence of self-stigma among the majority of our participants, women’s stories possessed a distinct aspect as they intertwined with gender-related role expectations and stigmas. For instance, Carmen shared her fear of menstrual blood, believing it could potentially harm her children—a story that may resonate with other cisgender women living with HIV:

When I was menstruating, I was so paranoid. I cleaned everything in the bathroom with bleach, and I told my children to put on some sandals [when going inside the bathroom]. [...] At the beginning I was so ignorant, believe me, because, whenever I menstruated, I was so afraid that I would infect my children. [...] It tormented me that, at any moment I could unintentionally infect [them]. I even washed my clothes separately.

Resilience

Although this study uncovered many adversities faced by PLHIV, perhaps the most important findings were the ways in which these individuals and communities experienced resilience and built toward a future that is supportive and inclusive of PLHIV. In assessing participants’ resilience, it becomes evident how well-informed, non-judgmental, and non-stigmatizing responses from friends, family members, and healthcare workers toward PLHIV are vital to having better physical and mental health outcomes. Furthermore, examples of successes in the political-economy ecology bring hope for systemic changes that can support PLHIV on a broader level.

Home and Family Social Ecology

Many participants emphasized the critical role of social support in overcoming adversities, as it provided both emotional and practical assistance throughout their experiences living with HIV. Ariel reflects on their relationship with their mother, highlighting that even in the absence of initial information, some family members may be motivated to learn about the diagnosis and provide support. This underscores the importance of having access to accurate resources and information in order to transform adversities into possible pathways to resilience. It highlights that adversities are not static and can change alongside social changes as knowledge becomes more publically available and compassion becomes a wider motivator. Of their experience with their mother, Ariel shares:

[...] we became closer to each other, and now she is more interested in the things that happen to me or the people who surround me. She has also gotten a little more involved in learning about HIV and I love to know that my mom uses the correct terminology now […]. It’s been hard with my sexual orientation too … but, I think that her motherly love, her desire to help me and build a good relationship with me, was much more important than her lack of understanding.

Ariel’s story exemplifies the significance of feeling supported, loved, and accepted by someone as important as a mother. Similarly, Pablo’s story highlights the crucial role of the home and family social ecology, in providing a sense of acceptance, which can be instrumental in coming to terms with the diagnosis. One of his closest cousins was the first person to know about his HIV diagnosis:

[…] he just stared back at me and then he said “Gosh, what are you going to do? Now you have to take better care of yourself.” He didn’t run away or get scared. And that was it. I never expected that, I always imagined the worst case scenarios; but, he just hugged me and understood. [...] He’s my emotional support.

Additionally, participants suggested that it was beneficial when family members had a previous understanding and accurate information about HIV because it helped destigmatize the condition and its characteristics. David shares his reflexion on the power of accessing accurate information and the learning process:

Now, I think that the power of communication and education is huge. If you educate people correctly and explain to them what HIV is, how it's transmitted, its effects, and all that … I think that if you educate people, you can achieve anything. I have been able to educate the people who know about my diagnosis, like my family. So, there is no fear, because they know that there is no risk, especially if you are undetectable.

These stories reflect the experiences of several participants who have benefited from the emotional support of their loved ones, leading to greater acceptance of their own diagnosis. These findings also underscore the importance of increasing the availability of integral and intersectional approaches which include family members, close friends, and the community as a part of PLHIV’s treatment, while also democratizing accurate HIV knowledge within communities. Taking into account these results and the ones illustrated in the Adversity section, we see how the family ecology becomes a critical factor in how PLHIV understand and approach their diagnoses, depending largely on the ways family members react to the diagnosis.

Community Social Ecology

According to participants’ stories, finding and building respectful and accepting communities helped them foster resilience by being able to share their experiences with others without fear of judgment. Mateo recalls:

I have always surrounded myself with people who understand me, long before the diagnosis. I have very good friends [...] And, I have shared my diagnosis with a few people, but they always talk to me normally, the way we always have [...].

Partaking in support groups for PLHIV was also a resilient experience for many participants. Many noted that they felt seen and heard in groups and it also helped them normalize their fears and experiences living with HIV. These groups provided safe spaces for participants to interact and to be themselves. Pamela highlights this, noting the challenge of finding a support group, but the fulfillment it brought once she did:

Yes, I have wanted to look for other groups, but it is difficult to find. It is very difficult. This is the only group [referring to VIHvir Support Groups] I’m a part of, and I have made very good friends [...].

Our participants consistently agreed that their diagnosis had ignited a sense of social solidarity, manifested through activism and volunteering. Since their diagnosis, they reported feeling a strong desire to help others undergoing similar experiences. Felipe shares his experience:

I would like to get involved, ideally in activism, and also in other support groups. Not only because of my HIV status, but in general, I would like to help others. My intention is to make sure that others are well.

This desire to engage in activism and support groups highlights the crucial role such involvement plays in creating safe spaces for PLHIV, thereby strengthening both their own and others’ resilience, resulting in “bilateral resilience.” This finding underscores the significance of centering individuals with lived experiences in interventions tailored to PLHIV. Rafael reflects on the importance of peer counseling, as it provides not only a safe space to share life but also a place to learn:

I believe peer counseling aims to give clear, truthful and accurate information from an experienced peer to another, who maybe is just starting out, who maybe just got diagnosed and needs to talk to someone who can understand them. Since the peer already has the understanding, [...] and has already gone through the same phases of accepting their HIV diagnosis, it is much easier to provide information and support people to get through this.

Finally, the motivation to search for information about HIV and, most importantly, the availability and the opportunity to access accurate information through various formats—such as face-to-face and virtual meetings, as well as diverse available resources online like infographics—was reported consistently as something useful in the process of understanding, accepting, and taking care of themselves. César states:

Yes, that's right, you have to [search for information] to better understand … because understanding is good, whether you have the virus or not. If you have it, then you can understand how to manage it and how to take care of yourself. And if you don’t, you can know how to be more supportive. [Investigating more] made me feel more confident … that I could adjust to the diagnosis, process it and continue with my life.

Similarly, increased knowledge also promoted better adherence to ART. Alfonso shared:

I know that with treatment, I can live normally. Of course, there are certain limitations […] and there are things totally outside of my control, like being vulnerable to many illnesses. So, I do try to take care of myself and I try to take care of my partner too [...].

Participants’ experiences highlight the significance of finding and nurturing respectful and accepting communities that foster resilience. The possibility to share experiences without fear of judgment was crucial, as it allowed participants to feel acknowledged and understood. These findings illuminate the agency and power of PLHIV, demonstrating their active efforts to improve not only their own circumstances but also those of others.

Political Economy Social Ecology

Participants discussed that access to ART and overall healthcare, with the specific goal of reaching an undetectable status, were crucial to developing resilience. According to them, it is fundamental that the government prioritize public health, to have more options regarding their treatment. While some participants felt privileged to have consistent access to medications at their hospitals, others experienced health inequities and a lack of life-saving care due to privatization. Santiago describes how he has relied upon private insurance to fill the gaps left by the public health system:

I have my private insurance, and I also get treated there [at a private clinic]. I only go to the public hospital for the medication [...]. And when there is no medication, I buy it through my private health insurance. So, I have never interrupted the treatment for more than 2-3 days a year [...].

Finally, participants shared that healthcare workers were a crucial factor when receiving their diagnosis, as they were the first point of contact for accurate knowledge about HIV. When health workers were non-judgmental, provided accurate information, and connected patients to other services as part of integrated treatment—such as counselors, psychologists, or support groups—participants were better able to navigate the initial phases of their diagnosis. Emilio illustrates this by saying:

Of course, I think that the first person who is going to be there for you is the healthcare professional, because they will be the first ones to be in contact with you about your diagnosis. The first doctor who told me about my diagnosis was very kind, too kind, she was a sweetheart. She helped ease me into the whole process. [...] I mean, she explained everything to me and when I didn’t understand, she repeated herself to make sure I understood it all. [...] Unfortunately, other people have told me that they have suffered [when receiving their diagnosis] because of the poor attention or mistreatment they received.

Our findings in the political-economy social ecology highlight the importance of compassionate and well-informed healthcare workers during the initial stages of an HIV diagnosis. Their role is pivotal to providing not only medical information but also emotional support which can significantly improve patients’ ability to cope with their diagnosis. The vital role of healthcare workers underscores the need for training programs that prioritize empathy, assertive communication, non-stigmatizing language, and facilitating patient connection to support services. Additionally, our findings suggest that participants with consistent access to ART demonstrated an increased capacity to navigate adversity and implement resilience strategies.

Discussion

Our study aimed to explore the stories of resilience and adversity of PLHIV in Ecuador, by focusing on their experiences, emotions, thoughts, fears, needs, strengths, and desires, with the intention of contributing to sociopolitical change. The findings of this study indicate that PLHIV in Ecuador face various adversities across different social spheres, including the family, community, and political economy. Through the application of a critical resilience framework adapted from Skovdal and Daniel’s work, our research demonstrates that PLHIV not only endure adversities but also tap into a range of resources and social support systems within these social spheres that allow them to cultivate their resilience.

This study delved into the emotional responses of participants upon learning about their diagnosis, uncovering dominant emotions of shame and guilt. These findings align with previous research that have underscored the non-trivial nature of these emotional states, as they directly impact whether and when PLHIV access treatment (Baugher et al., 2017; Cantisano et al., 2013; Rendina et al., 2018). However, the narratives of our participants revealed a reduction in internalized stigma, termed “self-stigma,” and an increase in their acceptance and ability to care for themselves through the acquisition of verified information about HIV. This emphasizes the need for standardized practices of sharing accurate health information at the point of diagnosis, as well as broader social education campaigns to reduce stigma (Mohammadifirouzeh et al., 2022). Additionally, this study also shows that increased knowledge promotes adherence to ART, which is supported by many other studies (Aspeling & Van Wyk, 2008; Martiana et al., 2019; Rasmussen et al., 2013).

Our findings also emphasize the role of healthcare workers as the first point of contact and a critical source of support when receiving an HIV diagnosis. Positive experiences with healthcare workers, characterized by kindness, support, and thorough explanations, were valuable in easing individuals into the diagnosis process. Yet, the healthcare system seems to be the social sphere in which PLHIV experience some of the most egregious discrimination. Many of the participants in our study reported poor attention, mistreatment, or abuse perpetrated by healthcare workers. In fact, during our data analysis, this was one of the most saturated themes, and codes were categorized as “structural violence experienced by PLHIV (neglect in the workplace, discrimination in the healthcare system, etc.).”

Dao et al. (2019) highlight the important role healthcare workers play in shaping the experiences of PLHIV, who often experience fear and lack of trust in healthcare providers. The attitude and knowledge of the first point of contact is crucial since it influences individuals’ perspectives on their diagnosis. A negative first encounter can deeply impact PLHIV well-being, mental health, and access to life-saving care. Therefore, it’s essential for improvements to be made in policy and practice, within the overall healthcare system, as it seems to have a snowball effect on the lives of PLHIV.

These improvements must acknowledge that the adversities faced by PLHIV vary across different identities and contexts, and that access to resilience resources is not universal, calling for an intersectional approach to healthcare (Jackson-Best & Edwards, 2018). Specifically, our findings resonate with the literature emphasizing that trans people on hormonal treatment require tailored care for their unique needs (Restar et al., 2019), which the Ecuadorian healthcare system currently fails to provide. This reinforces the urgent need for healthcare workers trained to administer ART and hormonal treatments simultaneously, reducing stigma and ensuring equitable access to care.

More broadly, prioritizing public health funding in Ecuador is indispensable. It would enable specialized training for healthcare workers on adequate, intersectional, up-to-date, HIV treatments, while fostering empathy and non-stigmatizing healthcare environments for PLHIV.

Our findings suggest that the ways in which family and friends react to PLHIV’s diagnosis too often lead to discrimination, violence, abuse, and prejudiced attitudes toward them. Many participants in our sample expressed limited to no support from their families, which aligns with previous research that has demonstrated that PLHIV often encounter a lack of support from their families upon disclosing their diagnosis (Beckman et al., 2016; Evangeli & Wroe, 2017) and therefore fear sharing it.

The significance that participants attributed to familial discrimination is notably high, reflecting the communal nature of Latin American societies, in contrast with the more individualistic context of the Global North where independence from family is highly valued. Latin American societies typically have more intertwined family dynamics, making it more challenging to distance oneself from family rejection and discrimination (García et al., 2022).

Participants reported similar feelings of being excluded from their families, within the context of their health treatment. In Latin America, family involvement in medical care is predominant; it is common for family members to accompany relatives to their medical appointments and surgical procedures and to assist them with medication management (Klimesch et al., 2023; Souza da Silva & Campos Tavares, 2015). This family involvement implies that when an individual’s health status conflicts with family expectations and beliefs, it can lead to considerable shame and rejection, often resulting in abandonment or exclusion.

Given the difficulties in achieving independence from family in Latin America, rejection and discrimination may increase crises of mental and physical health for PLHIV in the region. Recognizing this cultural distinction is crucial, as most research has historically focused on the Global North, leading to a limited understanding and representation of these experiences in Global South settings.

Addressing discrimination and violence against PLHIV within their families in a Global South context and including family members in treatment is vital to promoting their well-being. Studies show that Latin American families often expect healthcare providers to include them to participate in their family member’s care so that they can better support them within their homes (Dijkstra et al., 2023; García et al., 2022). Likewise, increasing awareness and understanding of HIV in society is essential to reducing stigma and dispelling myths surrounding the condition, thereby fostering empathy for those living with it. Efforts to combat stigma must be multifaceted and encompass education, policy, and public awareness to create environments that are inclusive and safe for PLHIV.

Furthermore, our study delves into the pivotal role of social solidarity in promoting resilience. Most of our participants expressed that their diagnosis had fostered a sense of solidarity with others who share the same diagnosis, inspiring them to engage in activism and volunteering. Involvement in social causes, alongside the creation of safe spaces for PLHIV, not only strengthened their resilience but also contributed to the resilience of others, suggesting a bidirectional role of resilience. This finding resonates with literature that has studied political activism as a coping mechanism and a way of improving marginalized groups’ mental health (Heard-Garris et al., 2021; Liboro et al., 2021).

The power of activism and the sense of unity and empathy it fosters can shed light on the potential benefits of collective action in promoting resilience and well-being within the PLHIV community. This finding is particularly important as it opens up a discussion concerning the role of governments in respecting rather than repressing and obstructing activist efforts. Cultivating and encouraging such spaces where community bonds and social solidarity are fostered can be a powerful mechanism for individual health as well as social change.

It is also crucial to recognize that the origins of discrimination and lack of support extend far beyond individual families or experiences with individual healthcare workers. Rather, this discrimination reflects a broader social and political context that normalizes discriminatory practices against PLHIV, despite existing legal protections (Chambers et al., 2015; Stringer et al., 2016). This underscores the importance of not only investing in cultural projects that support PLHIV but also advocating for policies and practices that protect their rights. Models such as that of Casapulla et al. (2022) highlight the effectiveness of narrative-based educational interventions in reducing HIV-related stigma and enhancing HIV knowledge in rural communities in Ecuador.

Discrimination and violence against PLHIV is not only a public health concern but also a political issue that demands immediate government action. Ensuring safe, non-stigmatizing environments for people accessing the healthcare system through effective policies and programs that address discrimination and stigma, these programs’ effectiveness has been extensively reported in the literature (Feyissa et al., 2019; Mohammadifirouzeh et al., 2022). For instance, Mohammadifirouzeh et al. (2022) found that successful interventions incorporated knowledge modules, peer education, patients’ testimonials, and stigma-free space interventions.

Finally, the study also revealed gaps in research which we recommend be prioritized in future studies of PLHIV. Our study hints at a distinctive aspect of the experiences of cisgender women with HIV, shedding light on the intersection of gender-related stigmas with the broader realm of self-stigma. One of our participants’ experience unveils a unique dimension of living with HIV as a woman, wherein fears surrounding menstruation and potential harm to her children became intertwined with her diagnosis. This narrative highlights the interconnectedness of multiple stigmatized identities and the layered emotional toll it can exact on individuals. Research efforts must be broadened in order to delve into the experiences of women living with HIV, as their voices appear vastly underrepresented within this area of study (Barr & Jefferys, 2020; Curno et al., 2016; Dubé et al., 2020).

Strengths and Limitations

The research provided nuanced insights into the experiences of PLHIV in Ecuador, enriching the discourse surrounding their lives. By adopting a critical approach to resilience, the study advanced discussions on the sociocultural and systemic factors affecting PLHIV, highlighting the crucial role of resilience in this context. Furthermore, involving PLHIV in validating the interview guide and training interviewers ensured the appropriateness and relevance of our research approach.

Nevertheless, certain limitations must be acknowledged. The small sample size, though allowing for in-depth exploration of individual narratives, may limit the generalizability of the findings to larger PLHIV populations. Additionally, the underrepresentation of women—only 3 out of 15 participants—highlights the need for further research into gender-related aspects, particularly the unique experiences of women with this diagnosis.

Conclusion

This study illuminates the challenges faced by PLHIV in Ecuador, where discrimination, restricted healthcare access, and pervasive stigma have severely impacted their physical and mental well-being. Our research not only identifies the central challenges within their social contexts—family, community, and political economy—but also uncovers potential solutions rooted in their resilience. The findings underscore the importance of community resources in fostering bilateral resilience and driving social transformation.

Legal protections alone are inadequate for ensuring proper testing, treatment, and safe environments for PLHIV. We recommend specific measures such as training healthcare providers to better serve diverse populations, launching campaigns to reduce HIV stigma, and increasing funding for intersectional healthcare services. Continued research should focus on intersecting identities, particularly trans and cisgender women in Latin America, to tailor support to their needs. Given the cultural proximity across Latin America as compared to the Global North where the majority of research on PLHIV has thus far been conducted, our findings have broader implications for the region, where a dearth of research has left their experiences largely unexamined.

Ethical Statement

Ethical Approval

The current study received ethics approval from the Human Research Ethics Committee (CEISH-USFQ) at the Universidad San Francisco de Quito—Ecuador (reference number P21-106M).

ORCID iD

Emilia Cristina Zamora-Moncayo https://orcid.org/0000-0001-6565-4564