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

Abstract 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.


| INTRODUCTION
The psychological impact of caring for people living with HIV (PLWH) has been well documented since the early days of the epidemic, not only for professionals, 1 but also for volunteer carers. 2 Generally, these cross-sectional studies reveal significant levels of stress and burnout, including high levels of emotional exhaustion, depersonalization and low levels of personal accomplishment. 3,4 Despite recent significant improvements in the prognosis for PLWH, research continues to highlight the negative psychological impact for healthcare workers caring for PLWH, 5 although positive aspects of caring have also been described. 6 Prevention and management of work-related stress in healthcare has received little attention, beyond sensible recommendations, such as reducing heavy workloads, provision of organizational support 7 and the use of specific therapeutic interventions, such as mindfulness training. 8 Historically, HIV care provided by healthcare and charity workers in the United Kingdom took a person-centred approach, whereby 'the services … respond to [PLWH's] needs and preferences in a humane and holistic way, [and] the person is a participant, not just a beneficiary'. 9 Such care relationships developed through a consideration of each person's unique illness experience, and their personal needs for intervention and treatment. 10 The development, progression and changes to person-centred care in HIV throughout the evolution of the epidemic have been discussed in detail elsewhere. 9,11 One feature of this model of care, of importance to the current paper, was the close relationships that developed between healthcare workers and those receiving care. Research shows that in the early days of the HIV epidemic, the poor prognosis, coupled with the stigma and discrimination faced by PLWH and those working in the HIV field, 12 fostered an unusually close emotional relationship between the carers and those cared for. 11 Such closeness was beneficial to PLWH, but potentially distressing to the healthcare workers themselves, particularly because the poor prognosis for those living with AIDS meant that carers were exposed to a continuous stream of deaths.
What has up until now not been examined in any depth is the affective relationality of HIV caregiving. While the concept of relationality emerged in psychoanalysis and symbolic interactionist thought, 13 relational ways of interpreting the world are emerging in a wide range of disciplines from psychiatry to philosophy. 14 Neither focusing on the individual nor the collective, relationality instead highlights our interdependency and the need to focus on relational categories in all of our analyses. 15 Conceiving of selves are transactional or 'interactants', and affect (states of being) as emergent, personal agency becomes ancillary to relations and the way they line up, especially in organizations like the NHS. 13,15 In this way of thinking, both patients and professionals are ultimately vulnerable beings. 16 We cannot help but be pulled into affective dramas, such as during times of epidemics, where '…we are [in] constant danger of our self being challenged … [of others] not providing the support we expect; or using our relationships to harm us' (p. 29). 17 The efforts of health workers to adjust have been documented both in the early days of the epidemic and more recently. 18,19 In some cases, the traumatic experiences of caring for people living and dying with HIV resulted in positive transformative changes. 20,21 Our paper explores relational accounts of participant change-at times positive-that followed the challenges and traumas of caring for people with HIV over extended periods of time.

| AIMS
The current study examined the experiences of healthcare workers and charity volunteers caring for PLWH in the United Kingdom starting before the emergence of effective drug regimens. The aims of the study were to, from a relational perspective, identify traumatic experiences of participants and describe efforts used to cope with them, as well as to explore longer-term consequences within the accounts, including any evidence of positive change and growth.
The study was qualitative, using one-to-one interviews to collect personal narratives. Such narratives reveal the essence of everyday life meanings, they encourage us to listen, as well as consider the moral dimensions of human experience. 22 Narrative accounts provide a unique window into different worlds, enabling people to put into words experiences in relation to their lives, and in ways that can be understood society-wide. 23,24 Ethical approval for the study was obtained through University of Westminster ethical procedures.
Written consent from each participant was gained, and a sensitivity protocol was in place for any participants who became distressed in interviews, which included the provision of emotional support to them. 25

| Participants
Healthcare workers and charity volunteers involved in providing care for PLWH in the 1980s and into the 2000s were invited to participate. Inclusion criteria included considerable experience (10 years or more) of caring for PLWH and participants being UKbased. Exclusions involved living outside the United Kingdom or experiencing severe mental illness. Participants were initially recruited using the authors' professional networks and represented expert patients, HIV nurses and doctors and HIV charity workers. As recruitment progressed, we attempted to include participants missing from our original list (e.g., Black and ethnic minority [BME] participants) via snowball sampling (i.e., where initial participants are asked to suggest new participants from their networks), and to ensure the inclusion of emergent issues of relevance to HIV care. 26 Twenty-four participants were invited by email to take part in an interview with one of the authors; 22 agreed to participate. Table 1 provides participants' sociodemographics as self-reported during interviews or obtained later through a follow-up email. This sample was drawn from a larger study (n = 53) investigating the experience of HIV in the United Kingdom from the mid-1980s to 2020. Participants who had provided care to PLWH were included in this study. Some participants knew J. C. and B. H. by reputation or professionally, but we ensured that the interviews were with researchers who did not know the participant. Interview guides were constructed using the narrative interviewer approach that encouraged participants to tell the story of their life working with PLWH, starting with when they first heard about HIV, as encouraging participants to 'tell their story' provides one of the richest sources of qualitative data. 22 However, where some participants found this challenging, asking about specific topics was also used. Our interview guide encouraged  Participants may have more than one role.

| Analysis
Our analysis centred on relational categories (i.e., the connections between people), for example, interactions with patients and coping strategies that involved others. Data were analysed iteratively and inductively, 27 using a reflexive thematic approach. 28 This approach allowed us to explore participants' lived experiences and the complex relational dynamics involved in care work in the HIV field. NVivo software was used to explore and organize the data. Initially, J. C.

| RESULTS
Study findings are presented around the themes shown in Table 2.

| Traumatic experiences emerge relationally
In the early years of the epidemic, close relations were encouraged between carers and PLWH through the emerging patient-centred care model. The rejection PLWH often experienced in their daily lives caused by the stigma of HIV, their sexuality or drug use, also promoted bonding within HIV care settings. Due to the demographics of HIV infection, healthcare professionals and patients were often of similar age and backgrounds, for example, both be men who have sex with men, meaning staff identified with those they were caring for.
It was challenging because they were our age in the main … and they were people like us, and they were getting very sick and dying, and that engendered a very strong camaraderie amongst clinicians and patients… (60, Doctor) As PLWH became severely ill, developed AIDS, and were thus closer to dying, their medical and support needs tended to increase substantially, leading healthcare workers to spend more time with them, encouraging ever stronger attachments. An intense connection at the point of death was common. For example, the nursing staff was sometimes the last intimate connection for dying people.

| Towards relational growth from trauma
The impact of loss, fear and trauma-as well as the build-up of more mundane but additionally dispiriting experiences-was not always acknowledged or addressed at the time, but was frequently recognized by participants sometime later, including during our interviews. The tension between the traumatic experiences, and the need to find ways to survive, and find a better work-life balance, could deeply and negatively affect participants, including in the ways selves were shaped: The death thing really gutted me and obviously

| DISCUSSION
We examined accounts and reflections of the healthcare workers, and charity volunteers regarding their experiences of supporting PLWH who were seriously ill and dying, taking an epistemologically relational approach. 13 We documented unusually close affective relationships between PLWH and their healthcare workers/support providers. By foregrounding relations as a lived reality, we were able to elucidate how valued meanings and even life purpose were emergent from the connections participants described. 30,31 This was evident in many of our findings, such as when participants highlighted the intimacy involved in the rituals around death; the ways in which closeness (including friendships) was forged with patients; how participants talked about needing to find ways to strategically distance themselves from patients; as well as the way conferences became ways to let off steam, connect with others and engage in a kind of collective therapy. There were highly challenging aspects to the way relations developed, like common experiences of trauma in losing people who had become emotionally close, with some people believing that they had to leave their roles to cope. There were blurred personal boundaries, which could make it difficult for participants to switch off and get the downtime they needed.
Consistent with other relational analyses pertaining to health, 32 identities and selves themselves were transactional and emergent too, such as when people believed they were changed by the trauma, for better (e.g., challenging internalized homophobia) or for worse (e.g., 'it fucks you up a bit'  themselves no longer to be in demand. 42 In a reversal of the acquisition of meaning at the time of crisis reported by some participants, some now found their lives had lost meaning and direction. The contribution of our paper is that the focus in our narratives was on the relational dimensions of traumatic growth, which the concept of PTG side-lines.
In terms of limitations, we cannot comment on what the impact of caring for PLWH would have been had a more traditional form of care been maintained, rather than a person-centred care approach.
Perhaps such an approach, while being clinically efficient, might have led to a greater emotional distance between carers and patients, possibly reducing the adverse psychological consequences for carers.
As the researchers facilitated the recruitment of participants through their personal and professional contacts, this may have restricted the range of opinions reported. However, two of the researchers (A. C. and D. R.) were not part of the UK history of HIV, so they were able to suggest participants, interrogate the data and conduct analysis as relative outsiders. As these narratives were collected from a specific healthcare system (i.e., NHS), other settings may yield different perspectives. Additionally, workers who left the field sooner than our long-standing workers may also have alternative narratives. Our findings are likely applicable to other health areas. As the world faces a new and intense pandemic, there is already evidence of adverse mental health consequences of caring for COVID-19 patients. [43][44][45] As back then, there are some suggestions that many COVID workers prefer informal and organizational support over formalized professional help. 46 Our work to understand the factors that could