Understanding advances in treatment and care of people living with and alongside HIV: Contributions from the Sociology of Health and Illness

Being ‘uninfectious’

Our first paper is Nicholls et al.'s (2021) Situating adherence to medicines: the embodied practices and hinterlands of HIV antiretrovirals, published in the June issue. The authors present an analysis of Black African and Black Caribbean women's experiences of adherence to HIV medicines, illustrated through the stories of three of these women. Their findings follow three analytical strands. First, they focus on the embodied and adaptive aspects of adherence, illustrating the tensions and ambivalences inherent for women attempting to resolve bodily experiences that compete and conflict with clinical expectations of treatment. They use Mol's (2002) term adapted adherence to depict a ‘fluid, contingent and bodily entanglement’ (p1092) with care and bodily attention to feeling well, as opposed to a singular or fixed rejection of medicine. Second, they depict how ideas of precarity, inequality and disadvantage both in the present and past influence these women's access to medicines and their ongoing use. For example, some women had experienced time in immigration detention centres, shared accommodation or violent relationships, giving rise to concerns of disclosure of their HIV status, being without medication, and the fragility of maintaining stable medication routines. Third, the authors explore how an embodied adherence is located to a broader set of present and historic temporal and spatial relations and networks of practices that are ‘not singular or linear, but multiple and recursive’ (p1095). The paper highlights how adherence for these women is grounded both in everyday practices and in a ‘hinterland’ of historical, political, geographic and social connections to care.

‘You have to withstand that because you have come for what you have come for’: barriers and facilitators to antiretroviral treatment access among older South Africans living with HIV by Schatz et al. (2021) is our second paper, published in the March issue. The authors draw on interviews from older people in two low-income townships outside Cape Town, originally created as part of apartheid, to understand the acceptability, affordability and availability of ART. Although HIV care at public health services is free at the point of delivery, significant costs arise for older patients from the transport needed in adverse weather conditions or for those who have mobility problems. Social grants have eased the financial precarity of some of these older people, although those aged 50–59 who are unable to get a disability grant, and those older people who share their pension with family members, can find access to services much more precarious. However, adherence clubs have enabled people to make less frequent trips to HIV services by dispensing greater quantitates of medication at each visit. Of note, with a population of low literacy, the authors suggest that mobile health technologies could help patients through electronic reminders for appointments and could serve to generate individual appointment times rather than the queuing system in use at the time of the study.

Our third paper, published in the June issue, is Keogh and Dodds' (2021) Tempering hope with intimate knowledge: contrasting emergences of the concept ‘uninfectious’ in HIV. The authors use Novas' (2006) framing of political economies of hope to consider how ‘uninfectious’ is framed in global public health campaigns and propose Raffles' (2002) concept of Intimate Knowledge both as a critical tool and a bridging concept between theoretical work on health-related social and political processes, and psychosocial research on more intimate, embodied experiences. Here, accounts of sexual and intimate lives captured at three key biomedical ‘breakthrough’ moments—the announcements of the effectiveness of ART in 1996; the ‘Swiss statement’ of 2008 that a person with HIV on effective treatment and a suppressed viral load cannot transmit HIV through sexual contact; and the UK PROUD trial findings confirming the effectiveness of PrEP (McCormack et al., 2016)—are reanalysed by asking how people living with or around HIV talked about their own infectiousness and their vulnerability to others. Their analysis finds that accounts captured around 1996 highlight the multiple and contested meanings that emerged when thinking about what it means for treatment to ‘be working’. Rather than providing clarity, certainty or security, ‘continuation of the painfully uncertain and open-ended negotiations that started when they were diagnosed’ (p1107) continued in an ongoing struggle to keep on living with HIV. Accounts recorded around 2008 emphasise both the complex, contingent and embodied understandings around infectiousness and the intimate work involved in new intimate and sexual spaces with others that the Swiss Statement created. Keogh & Dodds note how ‘technologies of hope’ such as U = U are premised on adherence to pharmaceutical regimes and claims of universality and infallibility. These technologies overlook both the day-to-day embodied experiences of individuals and the precarious political and economic conditions that underpin these.

Advancing HIV care and communication

Building on understandings of adherence and being ‘uninfectious’, the fourth paper, published in our February issue, is Pralat et al.'s (2021) Can HIV-positive gay men become parents? How men living with HIV and HIV clinicians talk about the possibility of having children. Here, findings are presented from interviews with patients and clinicians at HIV clinics in London, conducted shortly before the official endorsement of U = U, yet at a time when HIV-positive people commonly used the term ‘undetectable’. The article focuses on how gay HIV-positive men and their clinicians perceive the possibility of these men having children, and how men and their clinicians understand biomedical advances in this context. Strikingly, the paper reveals that although many men understood there were ways to father an HIV-negative child, most were unclear about how this could be done, or cited sperm washing as the available intervention, a practice now rarely used. Conversely, clinicians couched sperm washing in historical terms, noting it was no longer necessary for patients with an ‘undetectable’ viral load. Of note, being undetectable did not seem to trigger men's thoughts of their own possible future parenthood. In drawing attention to the paucity of research around gay, HIV-positive parenthood despite an increasing HIV-positive gay male population and increasingly diverse family formation, the authors identify the need to address the increasing number of these young men who may wish to become parents. By doing so, the authors go beyond notions of ‘undetectable’ in a sexual context to consider ‘undetectable’ in a reproductive context, and emphasise how finding ways for clinicians to communicate sensitively and effectively about the wider implications of being undetectable can foster a more holistic understanding of HIV transmission.

Our fifth paper, in this May issue, is Marent and Henwood's (2021) Platform encounters: A study of digitised patient follow-up in HIV care, which keeps the focus on communication between HIV-positive patients and their clinicians. As the authors note, service pressures from increasing populations with HIV and financial constraints have led healthcare providers, technology developers and other stakeholders to design and implement new digital platforms that can be offered alongside more traditional face-to-face consultations. In their evaluation of a co-design process of digitised patient follow-up in HIV care across sites in five countries (the EmERGE study), the authors employ Goffman's (1983) interaction order and Knorr Cetina's (2014) ‘scopic media’ to develop a framework of the qualities and affordances of doctor–patient interactions and experiences that occur in face-to-face, tele-interaction and platform encounters, and how these might reconfigure both the roles and responsibilities of patients and healthcare professionals and the structures of digital life more broadly. Drawing on analysis of co-design workshops, patient interviews and health professional interviews, the paper considers how participants experience different affordances of each interaction type along spatial, temporal and social dimensions. The analysis contributes a sociological understanding of both synchronous and asynchronous platform encounters, providing avenues for understanding the broader social implications of digital health and insights for reflecting on adequate forms of patient follow-up across different social situations and contexts.

The sixth paper, published in our March issue, is Janssen et al. (2021), ‘You're only there on the phone’? A qualitative exploration of community, affect and agential capacity in HIV self-testing using a smartphone app. The paper explores affective dimensions of self-testing for HIV in two very different social locations: Cape Town, South Africa and Montreal, Canada, and explores how meaning, actions and feelings arise through interaction with a new mobile app designed to support self-testing. Here, echoing Marent and Henwood's findings, the app allows participants to avoid certain parts of the healthcare system, especially where non-specialist staff are felt to be judgemental. Endorsing Nicholls et al's concept of ‘hinterland’, the paper highlights how the app's user is not just ‘there on the phone’, but comes with a history of previous contact and HIV testing and care experiences, with past experiences and social positioning giving rise to different experiences when using the app.

Political and legal understandings of moral conduct

The seventh paper, published in the February issue, is da Silva et al. (2021) Moral barriers to HIV prevention and care for gay and bisexual men: Challenges in times of conservatism in Brazil. In stark contrast to Pralat et al.'s observation that in western countries increasing numbers of openly gay men are deciding to become parents, these authors suggest that an intensification of a moral discourse combined with a neglect of discussions with young people of pleasure, eroticism and human rights are coming together to increase the vulnerability of Brazilian young gay men, and warn of the increasing rate of HIV transmission in this population, alongside a reduction of investment in national health services. In their interview-based study with young HIV-positive men, narratives of promiscuity are found to occupy a prominent place in the accounts of young men recently diagnosed and referred to HIV services in Salvador. The authors note that moral discourses in Brazilian society about promiscuity, including negative images and values, are directly affecting the prevention of transmission of HIV and access to treatment and care of those who suspect they may be HIV positive. Furthermore, these moral discourses serve to individualise the risk of HIV transmission, omitting the consideration of social and material inequalities that underpin a rising infection rate and that marginalise specific people and their behaviours.

Our last paper, published in this June issue, is When biographical disruption meets HIV exceptionalism: reshaping illness identities in the shadow of criminalisation (Orsini & Kilty, 2021). Despite healthcare professionals being long opposed to criminalisation of HIV nondisclosure as a deterrent to public health, HIV-positive individuals continue to face legal threat in nondisclosure of their status. Here, the moral, legal and ethical responsibilities and uncertainties of living with HIV in this context are examined, in particular through the actors that may be relied on in decision-making around disclosure. Through interviews with AIDS service staff across Canada, the authors explore how processes of biographical disruption (Bury, 1982) and experiences of stigma are interwoven in decisions to disclose an HIV status. The authors propose the concept of a ‘biography of telling’ that situates disclosure within the possibility of criminalisation and suggest that potential criminalisation shapes practices of (non)disclosure and thus the shifting identities and experiences of HIV-positive people. They consider to what extent a medico-legal borderland (Timmermans & Gabe, 2002), created by the criminalisation of nondisclosure of HIV, has brought about ‘a new regime of truth’ (p1140) around the obligations required to live ethically and morally with HIV, positioning people as inherently irresponsible and reckless, even when using a condom or maintaining a suppressed viral load. The authors conclude that ‘by sustaining problematic social, cultural and political fears of the moral character of people living with HIV, criminalisation jeopardises the advancements made to improve the public's understanding of HIV’ (p1145).