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March 17, 2026The Brazilian Journal of Infectious Diseases0 citationsOpen Access

Challenges of Decentralized Care for People Living With Hiv in the City of Rio De Janeiro: Access Perception and User Experience

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EFElisangela de Assis FerreiraUniversidade Federal do Rio de JaneiroCSClarissa Terenzi SeixasUniversité Paris CitéDADaniel Emilio da Silva AlmeidaMinistério da Saúde

Key Points

  • To analyze the care trajectories and user perceptions of people living with HIV treated at primary health units in Rio de Janeiro.
  • Conducted exploratory qualitative research through in-person and virtual interviews.
  • Utilized Bardin’s content analysis to explore responses in depth.
  • Interviewed sixteen ART users, including one female and fifteen males.
  • Users expressed concerns about medication access, particularly related to potential drug shortages.
  • Positive experiences included strong support from primary care professionals; negative experiences highlighted stigma and concerns about hospital treatment.
  • After eleven years of decentralized care, some users noted improved access but identified gaps in communication and information about their rights and care options.

Abstract

Since 2013, the city of Rio de Janeiro has granted autonomy to primary care teams for clinical follow-up of people living with HIV (PLHIV), decentralizing comprehensive long-term care. This study is part of a master’s thesis that aimed to analyze the care trajectories of people living with HIV treated at primary health units (PHUs) in Rio de Janeiro, focusing on user perceptions of care. Exploratory qualitative research conducted through in-person invitations and virtual interviews. Bardin’s content analysis method was used to explore responses in depth. Sixteen ART users from two PHUs were interviewed, one female and fifteen male. The thematic categories identified were: 1) Changes in treatment and medication access: During the previous federal administration, users expressed concerns about potential drug shortages, while others noticed reduced bureaucracy in medication access. Some mentioned the lack of private areas in pharmacies for HIV-related care. 2) Multidisciplinary support: Some participants noted the lack of accessible psychotherapy for newly diagnosed individuals. 3) Positive and negative experiences: Positive experiences included strong bonds and welcoming attitudes from primary care professionals managing HIV treatment; negative experiences involved stigma in hospital environments and reports of obstetric violence by healthcare workers. No negative experiences were reported within PHUs. 4) Message of support to newly diagnosed individuals: guidance focused on emotional support and reassurance at this initial stage, emphasizing that “it is not the end of life” and noting that technical information regarding self-care planning and medication management can be addressed later during clinical follow-up. After eleven years of the decentralized HIV care model, some users perceived improved access to services, though not always directly linked to institutional changes. However, there are gaps in communication and information dissemination to users, as some interviewees were unaware of their rights and basic information regarding long-term care planning and access to services available within the municipal public health network.

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Cite This Study

Ferreira et al. (2026) studied this question.

synapsesocial.com/papers/69b8f0f0deb47d591b8c58ddhttps://doi.org/10.1016/j.bjid.2026.104768
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