Smith Anthony K J, Brener Loren, Broady Timothy R, Saliba Bernard, Keen Phillip, Prain Bianca, Treloar Carla
Centre for Social Research in Health, UNSW Sydney, Australia; Australian Human Rights Institute, UNSW Sydney, Australia.
Centre for Social Research in Health, UNSW Sydney, Australia.
Soc Sci Med. 2025 Feb;367:117729. doi: 10.1016/j.socscimed.2025.117729. Epub 2025 Jan 21.
Patient work refers to the quotidian labour undertaken by individuals to manage health, often unrecognised by health systems. This article argues that anticipated and received stigma and inclusivity labour comprise additional forms of patient work specific to minority populations. We draw on a case study of gay and bisexual men's experiences accessing healthcare services related to HIV prevention and testing in New South Wales (NSW), Australia's most populous state. Although new HIV diagnoses have reduced in NSW, these declines have not been uniformly observed. This study aimed to understand experiences of stigma related to accessing healthcare amongst two priority populations identified in the state's HIV strategy: gay and bisexual men who are young or who are living in regional and outer metropolitan suburbs. We interviewed 32 participants in 2023, recruited via social media advertisements and email invitations, and analysed data thematically. Our findings emphasise how disclosure of sexual orientation and/or HIV status operates as a form of inclusivity labour, in which patients look for cues from health providers that disclosure will be safe and respected. Other forms of patient work required to navigate access to HIV prevention services included finding appropriate providers likely to prescribe HIV pre-exposure prophylaxis (PrEP) and managing service refusal from general practitioners. Patient work appeared to also be compounded by intersecting issues of anticipated and vicarious stigma, unavailability of sexual health services in regional areas, long waiting times, and increased costs of healthcare services. Although experiences of enacted stigma in healthcare were infrequently reported, interview accounts suggested that participants undertook extensive patient work to minimise or avoid stigmatising encounters with health providers. Focusing on patient work in the context of stigma illuminates the labour of underserved populations required to access safe and culturally competent healthcare services (including HIV prevention and testing), suggesting areas of unmet need from health systems.
患者工作是指个人为管理健康而进行的日常劳动，通常未被卫生系统所认识。本文认为，预期的和实际遭受的污名以及包容性劳动构成了少数群体特有的额外患者工作形式。我们借鉴了一项关于男同性恋者和双性恋者在澳大利亚人口最多的新南威尔士州（NSW）获得与艾滋病毒预防和检测相关医疗服务经历的案例研究。尽管新南威尔士州新的艾滋病毒诊断病例有所减少，但这些下降并非普遍存在。本研究旨在了解该州艾滋病毒战略中确定的两个优先群体在获得医疗保健方面与污名相关的经历：年轻的或居住在地区和大都市郊区的男同性恋者和双性恋者。我们在2023年采访了32名参与者，通过社交媒体广告和电子邮件邀请招募，并对数据进行了主题分析。我们的研究结果强调了性取向和/或艾滋病毒状况的披露如何作为一种包容性劳动形式发挥作用，即患者从医疗服务提供者那里寻找披露将是安全和受尊重的线索。获得艾滋病毒预防服务所需的其他患者工作形式包括找到可能开艾滋病毒暴露前预防药物（PrEP）的合适提供者，以及应对全科医生的服务拒绝。患者工作似乎还因预期污名和替代性污名、地区性健康服务不可用、等待时间长以及医疗服务成本增加等交叉问题而更加复杂。尽管很少有关于医疗保健中实际遭受污名的经历的报告，但访谈记录表明，参与者进行了大量的患者工作，以尽量减少或避免与医疗服务提供者发生污名化的接触。关注污名背景下的患者工作揭示了弱势群体为获得安全和具有文化能力的医疗服务（包括艾滋病毒预防和检测）所需的劳动，表明卫生系统存在未满足的需求领域。
