From activism to secrecy: Contemporary experiences of living with HIV in London in people diagnosed from 1986 to 2014

Abstract

BackgroundSuccesses in biomedicine have transformed HIV from a debilitating and frequently fatal infection to a chronic, manageable condition.ObjectiveTo explore how the contemporary metanarrative of HIV as a chronic condition is understood by patients and how it varies depending on when they were diagnosed.DesignQualitative interviews with 52 people living with HIV who were diagnosed during different phases in the history of the epidemic.Setting and participantsParticipants were recruited from two HIV clinics in London to include four “HIV generations”: generation 1 were those who had been diagnosed pre‐1997 (pre‐ART), generation 2 from 1997 to 2005 (complex ART), generation 3 from 2006 to 2012 (simpler ART) and generation 4 diagnosed in the year before the study (2013‐2014).ResultsParticipants in all HIV generations took their medication as prescribed, attended clinic appointments and were well informed about their immunological biomarkers. While the pre‐treatment generation had been engaged in community endeavours such as activism, public education and use of support groups, those more recently diagnosed had little experience of collective activities and their HIV was essentially a private matter, separate from their social identity. These strategies worked for some; however, those experiencing clinical or social problems related to HIV or wider issues often relied exclusively on their HIV clinic for wider support.ConclusionThe loss of public conversation around HIV, the imperative for patients to take on greater individual responsibility for HIV management and the streamlining of HIV services alongside reductions in ancillary support services may expose some people to suboptimal health outcomes.

Social Support Networks of People Recently Diagnosed with HIV in Queensland: A Qualitative Exploration

“…The findings presented in this chapter demonstrate that peer networks in Queensland are an important resource that must be valued, supported and promoted. In the chronic disease era, persisting HIV-related stigma, isolation and the increasingly individualised experience of living with HIV, have the potential to limit recently diagnosed PLHIV perceptions of the support available to them (Moyer & Hardon, 2014;Rai et al, 2018;Walker, 2019). Yet the findings presented here demonstrate that there are peer supporters in Queensland who are willing to speak up, to make themselves available, and to share their experiences as a means of supporting and educating others.…”

“…Delivering peer support to recently diagnosed PLHIV is challenging because of the diversity of people being diagnosed, the fear and stigma that prevents people from reaching out and the increasingly individualised experience of living with HIV (Rai et al, 2018). Peers and peer-led services have devised ways to overcome these challenges, but often, peer support programs remain peripheral to healthcare teams, inching along on short bursts of funding, which are aligned with political agendas or driven by biomedical endpoints (Enriquez, Farnan, & Neville, 2013;Gardiner, 2018).…”

“…However, HIV self-management, even for those sustaining undetectable viral load, is complex, with social and emotional aspects that these interventions may not adequately address (McDonald et al, 2016). Moreover, with fewer outlets for social support, the HIV experience becomes increasingly individualised (Poindexter & Shippy, 2010;Rai et al, 2018). Thus, it becomes vital that research provides an understanding of those people and resources that support people diagnosed with HIV.…”

“…Studies conducted in Australia demonstrate that PLHIV continue to report stigma and discrimination within clinical and community settings, even when stigma has been challenged through education and awareness raising (Centre for Social Research in Health, 2018;Slavin et al, 2011). Stigma can cause tensions within interpersonal relationships and impact PLHIV decisions to disclose or conceal their status among their social networks (Gardiner, 2018;Rai et al, 2018;Zukoski & Thorburn, 2009).…”

“…Social networks have played an essential role in supporting self-management and improving health outcomes for people living with chronic conditions Vassilev, Rogers, Kennedy, & Koetsenruijter, 2014). Yet little is known of recently diagnosed PLHIV experiences of seeking and mobilising network support following HIV diagnosis, particularly within the context of the stigma that continues to surround HIV (Rai, Bruton, Day, & Ward, 2018;Squire, 2015;Walker, 2019). Drawing on the findings of a multi-phase qualitative study, this thesis examines recently diagnosed PLHIV experiences of receiving social support following HIV diagnosis and highlights the characteristics, role and evolution of their social support networks during this pivotal period.…”