The interactive dimensions of encounters in HIV care: From trauma to relational traumatic growth.

INTRODUCTION: A person-centred model of care, developed in the early days of the HIV epidemic when there were no effective treatments for HIV, led to relatively close relationships between carers and people living with HIV (PLWH). Our study examines the experiences of carers using a relational framework, exploring the traumas and challenges involved, coping practices instigated by carers and the emergence of 'relational traumatic growth' opportunities. METHODS: Twenty-two UK healthcare workers and charity volunteers working with PLWH from the early years of the epidemic were recruited. Semistructured interviews were used to elicit participants' own stories of working with PLWH, from their initial involvement to the present time, and their reflections on the personal impact of working in the field of HIV. Data were analysed using a thematic approach employing relational categories. RESULTS: The impact of care was related to the formation of close relationships, identification with PLWH, high numbers of deaths and the difficulties and challenges encountered relationally. Participants described attempts to cope through informal and formal support, as well as endeavours to manage professional boundaries. Various ways of making sense of experiences were described, ranging from denial to abandoning the HIV field, to intense commitment. For some, traumatic experiences lead to validation, a search for personal meaning and managing the sense of loss with an exploration of further ventures, contributing to the achievement of relational traumatic growth. CONCLUSION: The intensity of relationships in HIV work, developed through the emotional and practical work of caring for PLWH, led healthcare workers and volunteers to experience a range of psychological consequences, both negative (including distress and emotional exhaustion) and also positive (such as acquiring a sense of purpose). PATIENT OR PUBLIC CONTRIBUTION: People living with HIV and those working with them were involved in the initial study conceptualization and design. The second and fourth authors of this paper were professionals working in HIV throughout the pandemic and have led on all aspects of the study. People living with HIV and those working with them additionally guided participant selection by suggesting participants and supporting recruitment. Narrative transcripts were checked and amended (if necessary) by participants. Initial findings were presented at the AIDS impact conference, where PLWH and those working with them attended and feedback on important ideas that helped to prioritize and shape the study findings.

HIV-related stigma in the UK then and now: to what extent are we on track to eliminate stigma? A qualitative investigation.

BACKGROUND: The introduction of effective antiretroviral treatment in the late 1990s led to the perception that HIV was a chronic but manageable condition. Nevertheless, stigma remains one of the major hurdles for people living with HIV (PLWH) to accessing healthcare and biomedical preventions. Thus, Fast Track Cities has set a target of zero HIV discrimination by 2030 as part of its strategy to end HIV transmission. METHODS: Fifty-three participants from the United Kingdom, including PLWH (n = 21, 40%), health and social care workers (n = 24, 45%), and charity workers and activists (n = 13, 25%), were recruited. Semi-structured interviews investigated stigma and discrimination, focusing on both before and after the widespread use of effective antiretroviral treatment in the late 1990s. Data were analysed using a thematic approach. RESULTS: Before effective antiretroviral treatment narratives were shaped by two main themes: 1) the media's role in influencing public opinion and contributing to misunderstandings of HIV transmission; and 2) personal experiences of HIV-related stigma, which for PLWH included incidents of physical violence and aggression, as well as fears of their HIV status being publicised. Contemporary narratives on stigma experiences were organised around four themes: 1) discrimination in healthcare settings; 2) stigma amongst men who have sex with men (MSM); 3) stigma towards African and Afro-Caribbean PLWH; and 4) the limits of change in public HIV-related knowledge and attitudes. Contemporary narratives indicated a reduction in enacted stigma, but continued anticipation of discrimination and self-reported shame, particularly in MSM and African and Afro-Caribbean PLWH. CONCLUSION: The nature of stigma against those with HIV has evolved. The intersection of PLWH and minority groups (e.g. MSM and African and Afro-Caribbean persons) may enhance anticipatory and internalised stigma, with some suggestion that this may contribute to reduced engagement in HIV care and prevention services. Our findings indicate the need for further research in this area, as well as proactive interventions with community groups to enhance knowledge of HIV.

The Changing Narratives of Death, Dying, and HIV in the United Kingdom.

Death and infection were closely linked from the start of the HIV epidemic, until successful treatments became available. The initial impact of mostly young, gay men dying from HIV was powerful in shaping UK responses. Neoliberal discourses developed at the same time, particularly focusing on how citizens (rather than the state) should take responsibility to improve health. Subsequently "successful ageing" became an allied discourse, further marginalising death discussions. Our study reflected on a broad range of meanings around death within the historical UK epidemic, to examine how dying narratives shape contemporary HIV experiences. Fifty-one participants including people living with HIV, professionals, and activists were recruited for semistructured interviews. Assuming a symbolic interactionist framework, analysis highlighted how HIV deaths were initially experienced as not only traumatic but also energizing, leading to creativity. With effective antiretrovirals, dying changed shape (e.g., loss of death literacy), and better integration of palliative care was recommended.