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.
Read full abstract