The perspective of people living with human immunodeficiency virus on their care in primary health care

Abstract

Municipal initiatives and guidelines from the Ministry of Health have positioned Primary Health Care (PHC) as the preferred point of care for people living with the human immunodeficiency virus (HIV). Since 2015, Florianópolis/SC (Brazil), has implemented the decentralization of this care to PHC. This qualitative study aimed to understand patients' perspectives on decentralized care, through interviews analyzed using thematic analysis. The results highlight improvements in access, relationship, comprehensiveness, longitudinality, and proximity to home. However, weaknesses were reported concerning breaches of confidentiality, staff turnover, difficulties in accessing other points of care, and resistance to follow-up within PHC. Despite the clear potential of PHC to provide quality care, ethical, organizational, and political challenges must be addressed to ensure comprehensive and equitable assistance for this population.

Keywords
Primary health care; Human immunodeficiency vírus; Acquired immunodeficiency syndrome; Decentralization; Care

Resumo

Experiências municipais e diretrizes do Ministério da Saúde têm destacado a Atenção Primária à Saúde (APS) como ponto preferencial no cuidado a pessoas vivendo com o vírus da imunodeficiência humana (HIV). Desde 2015, Florianópolis/SC (Brasil) iniciou a descentralização desse cuidado para a APS. Este estudo qualitativo objetivou compreender a perspectiva dos usuários sobre o cuidado descentralizado por meio de entrevistas submetidas à análise temática. Os resultados revelam avanços em acesso, vínculo, integralidade, longitudinalidade e proximidade ao domicílio. Contudo, foram relatadas fragilidades em relação à quebra de sigilo, à rotatividade de profissionais, às dificuldades de acesso a outros pontos de atenção e à resistência ao acompanhamento na APS. Apesar das evidentes potencialidades da APS para oferecer cuidado de qualidade, persistem desafios éticos, organizacionais e políticos que precisam ser superados para garantir assistência integral e equitativa a essas pessoas.

Palavras-chave
Atenção primária à saúde; Vírus da imunodeficiência humana; Síndrome da imunodeficiência adquirida; Descentralização; Cuidado

Resumen

Experiencias municipales y directrices del ministerio de la Salud han subrayado la Atención Primaria de la Salud (APS) como un punto referencial en el cuidado de personas que viven con el virus de la inmunodeficiencia humana (VIH). Desde 2015, Florianópolis/Estado de Santa Catarina (Brasil) comenzó la descentralización de ese cuidado para la APS. El objetivo de este estudio cualitativo fue comprender la perspectiva de los usuarios sobre el cuidado descentralizado, por medio de entrevistas sometidas a análisis temático. Los resultados revelan avances en acceso, vínculo, integralidad, longitudinalidad y proximidad al domicilio. No obstante, se relataron fragilidades con relación a la quiebra de sigilo, rotación de profesionales, dificultades de acceso y otros puntos de atención y resistencia al acompañamiento en la APS. A pesar de las evidentes potencialidades de la APS para ofrecer cuidado de calidad, persisten desafíos éticos, organizacionales y políticos que hay que superar para garantizar la asistencia integral y equitativa a esas personas.

Palabras clave
Atención primaria de la salud; Virus de la inmunodeficiencia humana; Síndrome de la inmunodeficiencia adquirida; Descentralización; Cuidado

Introduction

The emergence of the human immunodeficiency virus (HIV) epidemic launched various public health measures over the past few decades. In 2021, the Joint United Nations Programme on HIV/AIDS (UNAIDS) established the 95-95-95 target to be achieved by 2025¹. The target proposes that 95% of people living with HIV know their HIV status, 95% of those diagnosed are on antiretroviral therapy (ART), and 95% of those on treatment achieve viral suppression², defined as a viral load (VL) of less than or equal to 1,000 copies per milliliter of blood. Access to and adherence to ART make it possible to render VL undetectable in most cases, which underpins the concept of “U=U” (undetectable equals untransmittable), according to which people with undetectable VL do not transmit the virus through sexual contact. This strategy, integrated with other combined prevention measures, contributes significantly to interrupting the chain of HIV transmission²_.

In addition, new targets have been incorporated into the global goal: 95% of people using combined prevention, 95% of services seeking to eliminate vertical transmission, and 95% of women of reproductive age with access to sexual and reproductive health and HIV counseling services. The 95-95-95 target is part of the global agenda to combat HIV/AIDS, which aims to end the disease as a public health threat by 2030¹.

Biomedical advances and public policies that have expanded access to ART have resulted in the so-called chronicity of HIV, raising expectations for a possible “end of AIDS.” However, Sangaramoorthy³ argues that the chronicity of HIV does not represent the end of the epidemic, but rather a continuing crisis marked by uncertainty, inequities, and precariousness, especially in marginalized communities. The author proposes reorienting the biomedical understanding toward an anthropological perspective that recognizes HIV as a constant experience of crisis embedded in a broader socioeconomic crisis³. The discourse on the end of AIDS obscures inequalities and social determinants that hinder adherence to treatment and preventive strategies⁴.

Seffner et al.⁵ analyzed the setbacks in the Brazilian response to the HIV epidemic based on the concepts of precariousness of life and waste of experience. Precariousness refers to the vulnerability inherent in all people, which can be mitigated through political action and solidarity. The waste of experience criticizes the current medicalizing and individualistic approach, in contrast to strategies focused on prevention and a collective and supportive response. These setbacks reveal a tension between “keeping alive” and “letting die”, evidenced by increased access to diagnosis and treatment, parallel to the reinforcement of stigmatization. Solidarity is pointed to as a way to reduce vulnerabilities and rescue effective experiences⁵.

The care system for people living with HIV in Brazil, was initially structured within Specialized Care Services (SAE). The National HIV/AIDS Policy is guided by the principles of comprehensiveness and decentralization, focusing on health promotion and expanding access to diagnosis and care through coordination between levels of care and government spheres⁶. Recent guidelines give greater prominence to Primary Health Care (PHC), with risk stratification guiding care: asymptomatic and stable individuals are monitored in PHC, while pregnant women, children, individuals with advanced AIDS, or those with contraindications to first-line treatment remain in the SAE⁷. This change seeks to reduce inequalities and expand access, taking advantage of the territorial capillarity of PHC, its role as the gateway to the Brazilian National Health System (SUS), its longitudinal and comprehensive care, and its function as a care coordinator⁸.

PHC can act in prevention, counseling, diagnosis, and management. Rapid testing is one of the strategies most incorporated into PHC routines⁹. Some municipalities have advanced by implementing HIV management in PHC in shared management with secondary care, such as Rio de Janeiro (RJ), Porto Alegre (RS), and Florianópolis (SC)⁸,¹⁰.

Starting in 2015, Florianópolis/SC began incorporating HIV management into PHC through the training of family health teams (EqSF), matrix support with infectious disease specialists, and the development of diagnosis and treatment protocols. These actions resulted in broad adherence by EqSF to the care of people living with HIV⁸,¹¹. Despite the relevance of PHC in addressing the epidemic, the decentralization of care poses challenges, such as professional training, confidentiality management, and possible resistance from users to being monitored in their communities by general practitioners. These obstacles must be addressed for the effective inclusion of PHC in comprehensive care for people living with HIV¹².

Although there are Brazilian studies on the care of people living with HIV in PHC⁸,¹⁰-¹⁸, few investigate the experience of users in this process, addressing relevant aspects such as access, bonding, satisfaction, and the paradox of territory (expanded access with an increased risk of confidentiality breaches and stigmatization)¹²,¹⁵-¹⁷. This study aimed to understand the experience of users in decentralized HIV care.

Methods

This is a qualitative, empirical, and descriptive study. According to the 2022 Census, Florianópolis/SC has 537,211 inhabitants, a high human development index (0.847), and the 10th highest average salary in Brazil. However, 24.6% of the population lives on a monthly per capita income of up to half the minimum wage¹⁹. Municipal PHC consists of 50 health centers and 165 EqSF, most of which have family and community doctors (MFC in the Portuguese acronym), covering 100% of the territory²⁰. The participants in this study were people living with HIV who monitor their condition in PHC, either exclusively or in conjunction with secondary care. The inclusion criteria were: age 18 years or older and receiving HIV treatment in PHC, either exclusively or in a shared care model. Exclusion criteria were: cognitive or mental problems that compromised communication, as assessed by the researchers. It was not possible to obtain official data on the total number of people in the municipality who meet the established criteria.

During face-to-face recruitment, pharmacists and nursing technicians invited all users who collected antiretroviral drugs (ARVs) on the days of the interviews to participate in the study. It was not possible to record the proportion of adherence. Invitations were made in four of the five municipal Drug Dispensing Units (UDMs in the Portuguese acronym), excluding the smallest due to its low dispensing flow. In a second stage, users of the ARV Delivery program were invited via a messaging app by the pharmacist responsible for the service. This program delivers ARVs by mail to registered users. Those interested in collaborating with the research contacted the researchers through the same app. The number of interviewees was defined by saturation, suspending the inclusion of new participants when no new content emerged in successive interviews²¹.

Face-to-face interviews were conducted individually in UDM offices, while virtual interviews were conducted by audio or video call, according to the participants’ preference. After signing the Free and Informed Consent Form, participants answered a socioeconomic questionnaire and were interviewed using a semi-structured script. The interviews were audio-recorded and lasted an average of ten minutes. Data collection took place between October and November 2023.

The data were submitted to thematic analysis, according to Braun et al.²² The content was transcribed, read, and reread to familiarize ourselves with the data and search for patterns. Then, relevant segments that allowed for a meaningful analysis of the phenomenon studied were assigned codes. The coded data were grouped by semantic similarity, analyzed, and reviewed, generating three emerging themes and one previously defined by the researchers.

We used fictitious names and suppressed excerpts that could identify the user. The interviewers, who are the main authors of this study, were residents of MFC in local PHC and, therefore, avoided interviewing users with whom they had a care relationship. This research was approved by the Human Research Ethics Committee of the Federal University of Santa Catarina, in accordance with Resolution No. 466/12 of the National Health Council (opinion number 6.450.176).

Results and discussion

Of the 25 participants, 32% experienced care in both the SAE and PHC. Ages ranged from 26 to 69 years. Most identified as cisgender men (56%), followed by cisgender women (36%) and non-binary persons (8%). Regarding race/color, 56% self-identified as white, 32% as brown, in addition to one black participant (4%), one indigenous participant (4%), and one Asian participant (4%). Twenty percent of participants had a monthly household income greater than five minimum wages (US$1,320 at the time). Participants were distributed across 19 of the 50 PHC units, with 52% concentrated in six of them. The analysis resulted in four themes: satisfaction with care, decentralization of care, confidentiality, and access.

Satisfaction with care

Most participants (68%) were satisfied with the care they received. Speed, efficiency, technical qualifications, humane care, proximity, and rapport were cited as positive aspects.

The approaches of my doctor at the clinic are all very appropriate [...] well aligned with the Ministry of Health [...] good practices in the management of STIs [...] very concerned with the technical aspects, what they don’t know [...] they research, they come with guidance [...].

(Inácio)

The attributes of PHC — access, comprehensiveness, longitudinality, and coordination of care — emerged in the interviews. The findings converge with a study that investigated best practices in HIV care in different care models, showing the strengthening of bonds and longitudinality, with joint action by doctors and nurses in PHC²³. However, a study in Vitória da Conquista (BA) obtained contrasting results, reporting PHC that was not very effective, with incomplete and poorly qualified teams¹⁶. The findings of this study reflect the desired fundamentals of care in PHC: qualified clinicians whose practice is influenced by the needs of individuals and the community in which they work²⁴.

Participants who were partially satisfied or dissatisfied with the care cited poor relations with the reception staff, care restricted to prescription renewals and tests, and lack of information.

What is not welcoming is having to talk to the receptionist every time I am there.

(Murilo)

I think they [health professionals] could be a little more proactive with people who have HIV. Really see them as people, [...] I think they end up treating them as if they were just numbers: “here, take your prescription, bye.”

(Valdo)

The lack of in-depth knowledge on the part of doctors was addressed by Carlos:

With regard to HIV, there is no specific care. It is not an infectious disease specialist who treats it. It is the family doctor. He monitors it closely. He knows what it is. But he does not have in-depth knowledge about scientific research issues.

The experience of users corroborates the analysis that the decentralization of care to PHC faces moral, ethical, technical, organizational, and political challenges¹⁸. Decentralization strategies should consider the heterogeneity of PHC in Brazil, ensuring continuing education, addressing stigma, and providing an adequate structure to provide access and good quality care. Comprehensive care does not come exclusively from PHC¹². General practitioners are not expected to replace infectious disease specialists, but to have clinical skills for qualified diagnosis, treatment, and follow-up, with the support of protocols, matrix support, and referral when necessary⁸.

Decentralization of care

Previous experience with centralized care

Eight participants (32%) had previously received care at the SAE and are currently being monitored at the PHC. There are reports that decentralized care is more personal and humane, optimizes time, offers more flexible schedules, and improves confidentiality.

I go to the health center not because I have a specific illness, but because I may have several. And there [at the SAE], we also felt ashamed of running into someone we knew, right? Because, you know, they’re there, so maybe that’s why, you know?

(Luciano)

Other users expressed favorable perceptions of centralized care, highlighting as advantages the concentration of actions in a single service and direct access to the infectious disease specialist.

I know that there are many people who feel exposed because they are in a space like that [...] But I felt very welcome because there was a whole team prepared for my situation. Here, I still feel a little bit without a point of reference.

(Apolo)

As I come from a system [...] where care, welcoming, medication delivery, social assistance, and everything else is more centralized, it is easier for those who are carriers.

(Murilo)

I think that each area should have a specialist doctor to treat us. I miss consulting with an infectious disease specialist, because they are specialists and order more tests. At the clinic, they barely weigh us, they barely examine us to see if we have anything.

(Ângela)

Ângela’s statement suggests a belief in the need for specialists for each condition and in the association between the number of tests and the quality of care. Her negative experience in PHC reinforces this perception. Factors such as difficulties in access and deficiencies in infrastructure also contribute to mistrust regarding the quality of care in PHC²⁵, which is then seen as a barrier to access to specialists: “you only go to the infectious disease specialist if you are very ill, your tests are abnormal, and you are debilitated.” This statement reveals a lack of knowledge about the functions of PHC as a gateway, care coordinator, and rationalizer of access to secondary care. Care coordination expresses the commitment of PHC to understand users’ problems and guide them through the levels of care, ensuring comprehensive care²⁶. This logic favors greater health and economic efficiency and increases equity in access²⁷. In this context, communication skills and strengthening bonds can improve user satisfaction. Another participant, while recognizing the more in-depth care provided by the infectious disease specialist, stated that the MFC fully meets her needs, seeking technical support when necessary.

Care in the territory

Care in the territory has ambivalent characteristics: although it favors access, it exposes users to the risk of breach of confidentiality (highlighted and discussed in more detail below), with family and social repercussions¹²,¹⁴,¹⁵. Accessing treatment close to home was praised as a convenience, but travel between network locations was identified as a hindrance:

The difficulty is that it is not a working day, [...it is] usually around three days. It is one day [...] to go to the clinic. [...] another day [...] to do [the test]. And the other tests [...] platelets, cholesterol, blood, urine, are at [another] laboratory. [...] there is no referral center where the person would have a professional in the field and everything would be strictly located in one place.

(Dirlene)

In the city, VL, CD4, and serology tests for syphilis, HIV, and hepatitis B and C are performed by the municipal laboratory, while biochemical tests are done in contracted private laboratories. Travel to pick up ARVs at the UDMs was also cited as an obstacle, since only one Health Center dispenses them.

TARV Delivery, an ARV delivery service provided by the postal service, aims to facilitate adherence to treatment and was praised for working well, although only two interviewees used it. Several users contacted the service but did not follow up on their request, requiring investigation of the reasons by the unit.

A study conducted in Alagoas, where care for people living with HIV is concentrated in the capital, identified a higher risk of death among residents of rural areas and those who need to travel long distances to access treatment. The authors recommend decentralizing services to increase the survival of this population²⁸. In Florianópolis/SC, although consultations are decentralized, the user’s itinerary through the health services is difficult. Institutional planning is needed to facilitate care flows.

Comprehensiveness and longitudinality

Comprehensiveness, understood as the recognition and approach to the diverse health needs of users by PHC, ensuring access to services,²⁶ emerged from the statements as an important factor in the positive perception of HIV treatment in PHC.

They meet all demands. Recently, they have even been helping me with my hearing aid. I am very well assisted in all my needs, even those that are not STIs.

(Inácio)

I have nothing to complain about. From my little toe to the hair on my head, if I need anything, they are always willing to help.

(Rúbia)

Along with the chronicity of HIV, there is an increase in life expectancy and chronic noncommunicable diseases related to prolonged exposure to ARVs²⁹, which highlights the need for comprehensive care.

Longitudinal care presupposes a regular source of care over time, with bonding, trust, and cooperation. It makes it easier for professionals to get to know users individually and, combined with other attributes of PHC, fosters trust in professionals²⁶. This appeared in several reports, such as that of Carlos, who, despite feeling that he lacks more in-depth information from specialists, prefers to be monitored in PHC:

I have a doctor who has been monitoring me for four years, [...] he knows exactly what my situation is. The family doctor is more or less that benefit. It is more humanized. I bring the reference from São Paulo, where even though I was sometimes seen by the same doctor, every time I went, the doctor did not even know who I was, because he saw so many patients in a single day. And it is different when I am treated at the clinic. It is much closer.

(Carlos)

One interviewee diagnosed with HIV in PHC, who expressed a desire to continue treatment at the same place, emphasized the importance of a point of reference with a bond and security for his long-term care. However, the turnover of professionals, already recognized as a challenge for decentralization²⁵, has had significant impacts, such as temporary interruption of treatment, difficulty of access, and dissatisfaction due to the breakdown of longitudinality:

I’ve been there several times and there’s no doctor. I went a month without taking my medication. [...] That’s why my viral load was altered in the last test.

(Josival)

Longitudinal care requires that the individual recognize that team or professional as their regular source of care. In PHC, this role is mostly performed by the EqSF. However, some interviewees reported discomfort in receiving care from nurses:

I remember that the video call was even made by a nurse. I didn’t feel very comfortable because I could see that there were other people involved in the same issue. I wanted to see the same doctor who gave me the diagnosis.

(Gustavo)

This discomfort stems from the lack of recognition of nurses as being involved in care, reflecting the reproduction of a hierarchical logic that attributes greater prestige to medical knowledge than to nursing knowledge, and to specialists than to generalists³⁰. The municipality offers training to nurses, through protocols, for the care of people living with HIV and for combined prevention strategies, such as pre- and post-exposure prophylaxis. The qualification of nurses is essential to reduce insecurity in the management of HIV and avoid stigmatizing behaviors³¹.

The centralization of care in physicians may also be associated with fears of breach of confidentiality and the need to legitimize the role of PHC in this context¹². In this sense, it is essential that physicians contribute to the valorization and legitimization of nursing work in the eyes of users, recognizing its importance.

Confidentiality

Confidentiality is a significant challenge in the decentralization of HIV care¹²,¹³,¹⁵. Fear of breach of confidentiality can generate resistance to follow-up in PHC, and its breach negatively impacts the bond, adherence to treatment, mental health, and social and family relationships of the individual³².

Generally, this fear falls mainly on the community health worker (CHW), who is both a professional and a neighbor. In addition, contact with the reception desk may expose the reason for the consultation in public, causing discomfort, suffering, and possible avoidance of the service¹². Thus, care in the territory can paradoxically both expand and hinder access, given the social stigmatization of HIV¹⁵,³³. Tensions in contact with the reception desk, staffed by CHWs in local PHC, were reported by three users:

So, when I arrive, I find it embarrassing because you have to talk openly about your case.

(Edison)

Two participants reported breaches of confidentiality. Flávio says that during the pandemic, his VL test was exposed in a box outside the unit, where test requests were placed for users to pick up.

After that, I lost faith in the type of follow-up they were giving me. I’m not generalizing, but... I didn’t have the courage to continue with the treatment. I stopped treatment for basically six months.

(Flávio)

Another participant reported that her ARV prescription was given to her son-in-law without her permission:

And he never told me, only after he separated from my daughter, he would throw it in my face, saying that word ‘AIDS’.

(Anne)

Twenty participants did not face problems related to confidentiality, even recognizing the efforts of professionals to preserve it. In Luciano’s view, PHC offers greater confidentiality than the SAE, as it treats a variety of clinical conditions, making it difficult for other users to identify the reason for the consultation.

Going to the health center does not mean that I am going to treat a specific disease; it could be several. If you went to that center, people would already know why you were there. Because in most cases, we know it is HIV. That made me feel uncomfortable.

(Luciano)

As established by Law No. 14,289 of January 3, 2022³⁴, professional confidentiality must be ensured, avoiding compromising the continuity of care. The topic should also be included in continuing education initiatives, with a view to raising awareness and training PHC professionals.

Access

The decentralization of care is essential to expand access to HIV diagnosis and treatment³⁵. Access, a central attribute of PHC²⁶, plays a strategic role in this context, considering the need to expand coverage, destigmatize, reduce inequalities, prevent treatment interruption, and address the epidemic nature of the infection. Most participants (76%) reported quick access to appointments, prescription renewals, and follow-up tests.

It’s really quick. Even when [...] the doctor isn’t at the clinic and I need something, I go there to get the prescription. They leave the prescription there, and then she sends the tests and schedules the appointment really quickly.

(Yara)

The use of messaging apps and online forms as a channel of communication between staff and users was widespread in the municipality during the COVID-19 pandemic, used for teleconsultations, prescription renewals, and sending test results. After this period, these resources remained part of the routine at the units and were identified as facilitators of access. According to participants, after the online request, the prescription is renewed within one to seven days, with this deadline being notified in advance.

I was able to talk to them on Thursday. On Friday, I was given a date. On Monday, I saw the doctor. Today I am picking up my medication. Very practical. Everything is very fast. [...] Regardless of the medication or the illness, it is much more practical.

(Carlos)

Other participants reported different experiences, marked by barriers to access such as the need to arrive at the unit in the early hours of the morning, refusal of care without a previous qualified listening on the part of the staff, absence of doctors for long periods, issuance of prescriptions without face-to-face care, and consultations only with nurses. These failures, according to the reports, led to temporary interruptions in treatment.

You have to go to the health center and then you have to compete with a child who has a fever, [...], you have to go early in the morning to get a ticket.

(Dirlene)

[I couldn’t get seen] not even to explain, look, I just need a piece of paper to get the documentation, it’s not even that, you understand? [...] I would have to come back the next day, I would have to wait in line the next day, I would have to arrive early the next day, [...]. The health centers should be better prepared to serve people with any need. See what’s going on. Don’t get there and say, oh, I have two spots, and that’s two spots and that’s it, you know? Because there are people who need it right then.

(Juliano)

The barriers to access compromise the care and credibility of PHC, in a context marked by questions about its technical and ethical capacity to manage these cases¹²,¹³. High pressure to provide care, a lack of professionals, and understaffing are possible problems involved in the episodes reported, which add to the political, technical, ethical, and organizational challenges that must be faced to provide access and quality care in PHC¹²,¹⁸. It is essential to ensure a routine of qualified listening for welcoming and guiding users, even when it is not possible to offer a consultation on the same day. This first contact is essential for creating bonds and for the proper fulfillment of the role of PHC as the gateway to the health system.

A study on adherence to ARV in Florianópolis, Santa Catarina, indicated higher adherence among users with more consultations during the year and joint follow-up between PHC and secondary care, unlike women and black and brown people. Lower adherence among women may be associated with greater stigmatization, lack of interpersonal support, and higher prevalence of depression; in the case of black and brown people, it is related to lower education and income, greater social vulnerability, and difficulties in accessing health services³⁶. The higher adherence among people receiving joint follow-up suggests that progressive, phased decentralization may be a strategy to avoid common structural and organizational problems in PHC, which can compromise access and confidentiality, especially given the heterogeneous reality of PHC in Brazil¹⁸.

The limitations of this study include possible selection biases and the impossibility of generalizing the results to the country as a whole, due to the local context. In addition, users who obtain ARVs at the only UDM located in a health center were not interviewed. Further studies exploring the experience of ARV dispensing in PHC are needed.

Final considerations

This study, by investigating the user experience in HIV care in PHC, recorded gains and potential in terms of access, bonding, comprehensiveness, and longitudinality. However, there are still challenges to be faced in the process of consolidating PHC in decentralized care.

Care in the territory has ambiguous characteristics. On the one hand, it reduces the need for travel to consultations, expanding access; on the other hand, it poses challenges related to confidentiality management and the training of EqSF in the management of this condition. In addition, the collection of tests and the dispensing of ARVs are not carried out in PHC in the municipality investigated, requiring travel to other services. ARV delivery partially solves the problem, but adherence is still low.

The problems identified include staff turnover, weak links with nurses and CHWs, resistance to accepting PHC for HIV management, and problems with access and confidentiality. This impacts the user experience and should be considered in planning the decentralization of care, given the stigma surrounding HIV/AIDS that still exists.

Measures to consolidate decentralization include retaining professionals in teams, welcoming patients with qualified listening and preserving confidentiality, greater coverage by family health specialists, continuing education, and dispensing ARVs and collecting tests in PHC, reducing travel.

Acknowledgments

We would like to thank Raíssa Ortiz Pereira and the professionals at the UDMs for their essential collaboration in carrying out this work. We extend our thanks to Jardel Corrêa de Oliveira and Ronaldo Zonta for their valuable contributions as members of the examining board for this Final Project for the Residency in Family and Community Medicine. Finally, we would like to thank the reviewers for their dedicated and supportive collaboration, which significantly enriched the final version of the article.

• Ribeiro TCS, Silva TT, Freitas FL, Tesser CD. The perspective of people living with human immunodeficiency virus on their care in primary health care. Interface (Botucatu). 2025; 29: e250401 https://doi.org/10.1590/interface.250401
• Funding
  Charles Dalcanale Tesser receives a research productivity grant from the National Council for Scientific and Technological Development (CNPq) (process: 313822/2021-2).

Data Availability

The dataset supporting the results of this study was made available in SciELO Data and can be accessed in: https://doi.org/10.48331/SCIELODATA.BWYSWZ

References

• ¹ UNAIDS. Ending inequalities and getting back on track to end AIDS by 2030 [Internet]. Geneva: UNAIDS; 2021 [citado 29 Dez 2022]. Disponível em: https://www.unaids.org/sites/default/files/media_asset/2021-political-declaration_summary-10-targets_en.pdf
  » https://www.unaids.org/sites/default/files/media_asset/2021-political-declaration_summary-10-targets_en.pdf
• ² Organização Mundial de Saúde. O papel da supressão viral do VIH na melhoria da saúde individual e na redução da transmissão: síntese da política [Internet]. Genebra: OMS; 2023 [citado 3 Nov 2024]. Disponível em: https://iris.who.int/bitstream/handle/10665/372873/9789240077225-por.pdf
  » https://iris.who.int/bitstream/handle/10665/372873/9789240077225-por.pdf
• ³ Sangaramoorthy T. Chronicity, crisis, and the ‘end of AIDS’. Glob Public Health. 2018; 13(8):982-96.
• ⁴ Kenworthy N, Thomann M, Parker R. Critical perspectives on the “end of AIDS”. Glob Public Health. 2018; 13(8):957-59. doi: 10.1080/17441692.2018.146.
  » https://doi.org/10.1080/17441692.2018.146
• ⁵ Seffner F, Parker R. The waste of experience and precariousness of life: contemporary political moment of the Brazilian response to aids. Interface (Botucatu). 2016; 20(57):293-304. doi: 10.1590/1807-57622015.0459.
  » https://doi.org/10.1590/1807-57622015.0459
• ⁶ Brasil. Ministério da Saúde. Política Nacional de DST/AIDS [Internet]. Brasília: Ministério da Saúde; 1999 [citado 21 Out 2024]. Disponível em: https://bvsms.saude.gov.br/bvs/publicacoes/cd03_17.pdf
  » https://bvsms.saude.gov.br/bvs/publicacoes/cd03_17.pdf
• ⁷ Brasil. Ministério da Saúde. Manual do cuidado contínuo das pessoas vivendo com HIV/Aids [Internet]. Brasília: Ministério da Saúde; 2023 [citado 3 Nov 2024]. Disponível em: https://www.gov.br/aids/pt-br/central-de-conteudo/publicacoes/2023/manual-do-cuidado-continuo-das-pessoas-vivendo-com-hivaids-atual/view
  » https://www.gov.br/aids/pt-br/central-de-conteudo/publicacoes/2023/manual-do-cuidado-continuo-das-pessoas-vivendo-com-hivaids-atual/view
• ⁸ Pinto VM, Capeletti NM. Reorganização do modelo de atenção às pessoas vivendo com HIV: A experiência do município de Florianópolis. Rev Bras Med Fam Comunidade. 2019; 14(41):1710. doi: 10.5712/rbmfc14(41)1710.
  » https://doi.org/10.5712/rbmfc14(41)1710
• ⁹ Brasil. Ministério da Saúde. Secretaria de Vigilância em Saúde. Portaria nº 151, de 14 de Outubro de 2009. Brasília: Ministério da Saúde; 2009 [citado 29 Dez 2022]. Disponível em: https://bvsms.saude.gov.br/bvs/saudelegis/svs/2009/prt0151_14_10_2009.html
  » https://bvsms.saude.gov.br/bvs/saudelegis/svs/2009/prt0151_14_10_2009.html
• ¹⁰ Brasil. Ministério da Saúde. Caderno de Boas Práticas em HIV/Aids na Atenção Básica [Internet]. Brasília: Ministério da Saúde; 2014 [citado 3 Nov 2024]. Disponível em: https://bvsms.saude.gov.br/bvs/publicacoes/caderno_boas_praticas_hiv_aids_atencao_basica.pdf
  » https://bvsms.saude.gov.br/bvs/publicacoes/caderno_boas_praticas_hiv_aids_atencao_basica.pdf
• ¹¹ Carvalho VKA, Godoi DF, Perini FB, Vidor AC. Cuidado compartilhado de pessoas vivendo com HIV/Aids na Atenção Primária: resultados da descentralização em Florianópolis. Rev Bras Med Fam Comunidade. 2020; 15(42):2066. doi: 10.5712/rbmfc15(42)2066.
  » https://doi.org/10.5712/rbmfc15(42)2066
• ¹² Melo EA, Agostini R, Damião JJ, Filgueiras SL, Maksud I. Cuidado de pessoas vivendo com HIV na atenção primária à saúde: reconfigurações na rede de atenção à saúde? Cad Saude Publica. 2021; 37(12):e00344120. doi: 10.1590/0102-311X00344120.
  » https://doi.org/10.1590/0102-311X00344120
• ¹³ Alves BL, Lago RF, Engstrom EM. O cuidado às Pessoas Vivendo com HIV/Aids na Atenção Primária à Saúde na cidade do Rio de Janeiro: uma avaliação de implantação. Saude Debate. 2022; 46 Spec No 7:31-47. doi: 10.1590/0103-11042022E702.
  » https://doi.org/10.1590/0103-11042022E702
• ¹⁴ Zambenedetti G, Silva RAN. Descentralização da atenção em HIV/Aids para a atenção básica: tensões e potencialidades. Physis. 2016; 26(3):785-806. doi: 10.1590/s0103-73312016000300005.
  » https://doi.org/10.1590/s0103-73312016000300005
• ¹⁵ Sciarotta D, Melo EA, Damião JJ, Filgueiras SL, Gouvêa MV, Baptista JGB, et al. O “segredo” sobre o diagnóstico de HIV/Aids na Atenção Primária à Saúde. Interface (Botucatu). 2021; 25:e200878. doi: 10.1590/interface.200878.
  » https://doi.org/10.1590/interface.200878
• ¹⁶ Costa AS. Descentralização do cuidado às pessoas vivendo com HIV/Aids para a atenção básica: a percepção dos usuários da região de saúde de Vitória da Conquista/BA [dissertação]. Vitória da Conquista (BA): Universidade Federal da Bahia; 2019.
• ¹⁷ Duarte FMND. Análise da descentralização do compartilhamento do cuidado da pessoa vivendo com HIV/Aids (PVHA) à atenção primária à saúde em Campo Grande, MS [dissertação]. Campo Grande: Universidade Federal do Mato Grosso do Sul; 2023.
• ¹⁸ Melo EA, Maksud I, Agostini R. Cuidado, HIV/Aids e atenção primária no Brasil: desafio para a atenção no Sistema Único de Saúde? Rev Panam Salud Publica. 2018; 42:e151. doi: 10.26633/ RPSP.2018.151.
  » https://doi.org/10.26633/ RPSP.2018.151
• ¹⁹ Instituto Brasileiro de Geografia e Estatística. Cidades: Florianópolis [Internet]. Rio de Janeiro: IBGE; 2022 [citado 16 Nov 2024]. Disponível em: https://cidades.ibge.gov.br/brasil/sc/florianopolis/panorama
  » https://cidades.ibge.gov.br/brasil/sc/florianopolis/panorama
• ²⁰ Brasil. Ministério da Saúde. E-Gestor Atenção Primária à Saúde [Internet]. Brasília: Ministério da Saúde; 2021 [citado 2 Fev 2024]. Disponível em: https://egestorab.saude.gov.br/
  » https://egestorab.saude.gov.br/
• ²¹ Fontanella BJB, Ricas J, Turato ER. Amostragem por saturação em pesquisas qualitativas em saúde: contribuições teóricas. Cad Saude Publica. 2008; 24(1):17-27. doi: 10.1590/S0102-311X2008000100003.
  » https://doi.org/10.1590/S0102-311X2008000100003
• ²² Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2008; 3(2):77-101. doi: 10.1191/1478088706qp063oa.
  » https://doi.org/10.1191/1478088706qp063oa
• ²³ Metelski FK, Celuppi IC, Meirelles BHS, Coelho B, Silva MM, Abreu WJCP. Melhores práticas no cuidado às pessoas vivendo com HIV em diferentes modelos de cuidado. Rev Enferm UFSM. 2023; 13(e34):1-22. doi: 10.5902/2179769284152.
  » https://doi.org/10.5902/2179769284152
• ²⁴ Gusso G, Lopes JMC, Dias LC. Tratado de Medicina de Família e Comunidade: Princípios, Formação e Prática. 2a ed. Porto Alegre: Artmed; 2019.
• ²⁵ Pinho CM, Silva MAS, Lima MCL, Silva DIB, Cabral JR, Bezerra BL, et al. Processo de implantação do atendimento às pessoas vivendo com HIV para a atenção primária à saúde. Rev Eletronica Acervo Saude. 2023; 23(9):e13506. doi: 10.25248/REAS.e13506.2023.
  » https://doi.org/10.25248/REAS.e13506.2023
• ²⁶ Starfield B. Atenção primária: equilíbrio entre necessidades de saúde, serviços e tecnologia. Brasília: Unesco; 2002.
• ²⁷ Ortun V, Gervas J. Fundamentos y eficiencia de la atención médica primaria. Med Clin (Barc). 1996; 106(3):97-102.
• ²⁸ Melo GC, Carvalho ACA, Moreira AS, Paixão JTS. Tempo de sobrevida e distância para acesso a tratamento especializado por pessoas vivendo com HIV/Aids no Estado do Alagoas, Brasil. Rev Bras Epidemiol. 2021; 24:E210019/SUPL.1. doi: 10.1590/1980-549720210019.supl.1.
  » https://doi.org/10.1590/1980-549720210019.supl.1
• ²⁹ Maciel RA. Multimorbidade em pacientes com HIV acima dos 50 anos de idade: Descrição de comorbidades não relacionadas à Aids em uma coorte e comparação com a população geral [dissertação]. Porto Alegre: Universidade Federal do Rio Grande do Sul; 2017.
• ³⁰ Carapinheiro G. Os desafios dos saberes na investigação em saúde. Forum Sociol. 2014; (24):13-8.
• ³¹ Lima MCL, Pinho CM, Dourado CARO, Silva MAS, Andrade MS. Diagnostic aspects and in-service training in the decentralization of care to people living with HIV. Rev Esc Enferm USP. 2021; 55:e20210065. doi: 10.1590/1980-220X-REEUSP-2021-0065.
  » https://doi.org/10.1590/1980-220X-REEUSP-2021-0065
• ³² Abdalla FTM, Nichiata LYI. A abertura da privacidade e o sigilo das informações sobre o HIV/Aids das mulheres atendidas pelo Programa Saúde da Família no município de São Paulo, Brasil. Saude Soc. 2008; 17(2):140-52. doi: 10.1590/S0104-12902008000200014.
  » https://doi.org/10.1590/S0104-12902008000200014
• ³³ Zambenedetti G, Silva RAN. O paradoxo do território e os processos de estigmatização no acesso ao diagnóstico de HIV na atenção básica em saúde. Estud Psicol (Natal). 2015; 20(4):229-40. doi: 10.5935/1678-4669.20150024.
  » https://doi.org/10.5935/1678-4669.20150024
• ³⁴ Brasil. Lei nº 14.289, de 3 de Janeiro de 2022. Torna obrigatória a preservação do sigilo sobre a condição de pessoa que vive com infecção pelos vírus da imunodeficiência humana (HIV) e das hepatites crônicas (HBV e HCV) e de pessoa com hanseníase e com tuberculose, nos casos que estabelece; e altera a Lei nº 6.259, de 30 de Outubro de 1975. Diário Oficial da União. 4 Jan 2022.
• ³⁵ Brasil. Ministério da Saúde. 5 passos para a implementação do Manejo da Infecção pelo HIV na Atenção Básica: guia para gestores [Internet]. Brasília: Ministério da Saúde; 2015 [citado 17 Nov 2024]. Disponível em: https://antigo.aids.gov.br/pt-br/pub/2014/5-passos-para-implementacao-do-manejo-da-infeccao-pelo-hiv-na-atencao-basica
  » https://antigo.aids.gov.br/pt-br/pub/2014/5-passos-para-implementacao-do-manejo-da-infeccao-pelo-hiv-na-atencao-basica
• ³⁶ Maria MPM, Carvalho MP, Fassa AG. Adesão à terapia antirretroviral de pessoas vivendo com HIV/aids em Florianópolis, Santa Catarina, Brasil. Cad Saude Publica. 2023; 39(1):e00099622. doi: 10.1590/0102-311XPT099622.
  » https://doi.org/10.1590/0102-311XPT099622

Edited by

• Editor
  Denise Martin Coviello https://orcid.org/0000-0002-6894-2702

• Associated editor
  Lucas Pereira de Melo https://orcid.org/0000-0001-8392-1398

Publication Dates

• Publication in this collection
  07 Nov 2025
• Date of issue
  2025

History

• Received
  11 Jan 2025
• Accepted
  13 June 2025