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

Changing and unfinished narratives of the mental health impact of HIV in the UK

The mental health impacts of HIV have evolved significantly over the last four decades, in parallel with changes in the virus's overall health consequences. This study charts transformation in narratives about mental health problems associated with HIV over the course of the epidemic, as outlined by people with HIV (40%), professional carers (45%) and activists (25%) in the UK. In particular, our study examines evolving mental health impacts and changing service provision during three key periods: The early days of the epidemic; after the introduction of effective antiretroviral therapy (ART) in 1996; and in more recent times as HIV came to be regarded as a chronic manageable condition. Fifty-three participants were recruited: Male (68%), female (32%), White (90%), African/Afro Caribbean (6%) and South Asian (4%). Results indicate that despite important changes in the severity and nature of the mental health impacts of HIV, there were persistent challenges, related to the long-term mental health consequences of HIV among earlier generations of people with HIV. There were additional challenges associated with: ageing with HIV; the development of sexual dysfunction; and the possibility of neurocognitive impairment. The organization of mental health care for people with HIV moved from specialist teams to general practice, presenting challenges of mainstreaming care. The commissioning and delivery of mental health services need to be sensitive to the ever-changing social contexts and the potential for ‘left behind’ people living with HIV, despite the overall ‘naturalisation’ of HIV

“We are our choices” – AIDS impact special issue Amsterdam 2015

International audienceNo abstract availabl