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通过意大利多中心非干预性研究 DIAMANTE 中的叙事医学研究 HIV 感染者的应对和污名化。

Investigating coping and stigma in people living with HIV through narrative medicine in the Italian multicentre non-interventional study DIAMANTE.

机构信息

HIV/AIDS Unit, National Institute for Infectious Diseases "Lazzaro Spallanzani" IRCCS, Rome, Italy.

Infectious Diseases Clinic, Papa Giovanni XXIII Hospital, Bergamo, Italy.

出版信息

Sci Rep. 2023 Oct 17;13(1):17624. doi: 10.1038/s41598-023-44768-2.

Abstract

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.

摘要

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。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/4804/10582167/59b2bafa76ed/41598_2023_44768_Fig1_HTML.jpg

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