HIV/AIDS Unit, National Institute for Infectious Diseases "Lazzaro Spallanzani" IRCCS, Rome, Italy.
Infectious Diseases Clinic, Papa Giovanni XXIII Hospital, Bergamo, Italy.
Sci Rep. 2023 Oct 17;13(1):17624. doi: 10.1038/s41598-023-44768-2.
Antiretroviral therapy (ART) significantly reduced Human Immunodeficiency Virus (HIV) morbidity and mortality; nevertheless, stigma still characterises the living with this condition. This study explored patients' coping experience by integrating narrative medicine (NM) in a non-interventional clinical trial. From June 2018 to September 2020 the study involved 18 centres across Italy; enrolled patients were both D/C/F/TAF naïve and previously ART-treated. Narratives were collected at enrolment (V1) and last visit (V4) and then independently analysed by three NM specialist researchers through content analysis. One-hundred and fourteen patients completed both V1 and V4 narratives. Supportive relationships with clinicians and undetectable viral load facilitated coping. Conversely, lack of disclosure of HIV-positive status, HIV metaphors, and unwillingness to narrate the life before the diagnosis indicated internalised stigma. This is the first non-interventional study to include narratives as patient reported outcomes (PROs). Improving HIV awareness and reducing the sense of guilt experienced by patients helps to overcome stigma and foster coping.
抗逆转录病毒疗法（ART）显著降低了人类免疫缺陷病毒（HIV）的发病率和死亡率；然而，耻辱感仍然是感染这种疾病的特征。本研究通过将叙事医学（NM）整合到非干预性临床试验中，探讨了患者的应对体验。2018 年 6 月至 2020 年 9 月，该研究涉及意大利的 18 个中心；纳入的患者均为初次使用 D/C/F/TAF 或之前接受过 ART 治疗的患者。在入组时（V1）和最后一次就诊时（V4）收集了叙事，并由三名 NM 专家研究人员通过内容分析独立进行分析。114 名患者完成了 V1 和 V4 的叙事。与临床医生建立支持性关系和检测不到的病毒载量有助于应对。相反，未能透露 HIV 阳性状态、HIV 隐喻以及不愿意叙述诊断前的生活表明存在内化的耻辱感。这是第一项将叙事作为患者报告结局（PRO）纳入的非干预性研究。提高 HIV 意识和减轻患者的内疚感有助于克服耻辱感并促进应对。
