{
  "abstract": "Background Despite biomedical advances, women with HIV (WWH) still face stigma, moralised guilty narratives, and structural inequalities. Diagnosis and disclosure may represent critical biographical turning points that disrupt identity and relations, but could also activate processes of agency, coping, and identity reconstruction that impact well-being. However, how women negotiate diagnosis and disclosure in everyday life and how these processes shape patient-reported outcomes (PROs) is poorly explored, especially from a sociological perspective.Material and Methods We conducted a qualitative study based on semi-structured interviews with WWH. Using a participatory research perspective, clinicians and people with HIV (PWH) were involved in the study design, recruitment, and interpretation of results. The project involved LILA Como, the Infectious Diseases Unit of IRCCS San Gerardo (Monza), and the Department of Sociology and Social Research of the University of Milano-Bicocca. Participants were recruited through clinical and community networks. Interviews, lasting approximately 1 hour each, explored diagnosis, disclosure, stigma, relationships, coping strategies, and healthcare experiences. The study received Ethics Committee approval.Results Fifteen WWH, aged 35 to 75, were interviewed. Thematic analysis showed that diagnosis is narrated as a biographical rupture of taken-for-granted identities and future imaginaries. Through biographical reconstruction and agency-oriented coping, participants engaged in active meaning-making to restore continuity. Strategies included cognitive reframing of HIV as a chronic and manageable condition, emotional regulation, information-seeking, and reorganisation of life priorities. Disclosure emerged as a relational practice rather than a single event: WWH calibrated timing, audience, and narrative framing according to anticipated stigma, gender norms, and power asymmetries. Boundary-setting in intimate and family relationships acted as protection, while selective openness preserved social belonging. Peer networks fostered collective coping, reinforcing self-efficacy and resilience. Although stigma—often moralised around sexuality and responsibility—affected self-perception and mental well-being, coping practices mitigated its impact by supporting identity renegotiation, empowerment, and perceived control over life trajectories. Supportive clinical relationships further enhanced adherence and positively influenced self-reported quality of life.Conclusions Women’s experiences of HIV highlight the dynamic interplay between stigma and agency, showing how diagnosis and disclosure function as socially embedded turning points that require active processes of biographical and identity reconstruction. Integrating PROs into HIV care from a social sciences perspective could empower women as active agents in their health trajectories, thus complementing biomedical advances.",
  "authors": [
    {
      "affiliations": [
        "Department of Sociology and Social Research, University of Milano-Bicocca, Milan, Italy"
      ],
      "name": "S Bergamo"
    },
    {
      "affiliations": [
        "Department of Sociology and Social Research, University of Milano-Bicocca, Milan, Italy"
      ],
      "name": "F Ferrami"
    },
    {
      "affiliations": [
        "Clinic of Infectious Diseases, Fondazione IRCCS San Gerardo dei Tintori, Monza, Italy"
      ],
      "name": "F Sabbatini"
    },
    {
      "affiliations": [
        "LILA, Como, Italy"
      ],
      "name": "G Giupponi"
    },
    {
      "affiliations": [
        "Clinic of Infectious Diseases, Fondazione IRCCS San Gerardo dei Tintori, Monza, Italy"
      ],
      "name": "V Cogliandro"
    },
    {
      "affiliations": [
        "Clinic of Infectious Diseases, Fondazione IRCCS San Gerardo dei Tintori, Monza, Italy"
      ],
      "name": "N Squillace"
    },
    {
      "affiliations": [
        "School of Medicine and Surgery, University of Milano-Bicocca, Monza, Italy"
      ],
      "name": "P Bonfanti"
    },
    {
      "affiliations": [
        "Department of Sociology and Social Research, University of Milano-Bicocca, Milan, Italy"
      ],
      "name": "F Gaspani"
    },
    {
      "affiliations": [
        "Clinic of Infectious Diseases, Fondazione IRCCS San Gerardo dei Tintori, Monza, Italy"
      ],
      "name": "A Soria"
    }
  ],
  "title": "OC20 ‘Narrating to transform’: stigma, coping, and the reshaping of life trajectories from diagnosis to disclosure among women with HIV",
  "uid": "84aacd65-f96c-5289-acd7-88729bb8538b"
}