Care-crafting and creative nursing: HIV/AIDS histories and the rise of person-centred care

Laura Savidge, mental health nurse and co-author of the forthcoming study “Nursing a ‘Plague’, A History of HIV & AIDS Care, 1981-1996”, writes:

‘And I can remember seeing what was – he loved chocolate – and from his mouth was coming this brown staining, and I didn’t know whether this was chocolate or whether this was – you know – lesions in his mouth, and altered blood. And I can remember coming away from having helped him with his breakfast, and saying to somebody in the – in our main office – “it would be good to know which one that is.”‘

Some histories of AIDS come to mind before others. Retellings can transform what was once a marginalised experience into a common heritage, flattened into the long shadows of John Hurt’s tombstone advert and Norman Fowler’s letter-drop campaign, which were for so many in the UK their introduction to the disease. As Sontag wrote in 1989, AIDS gives ‘large-scale occasion’ to the metaphor of illness.^[1] The temptation to conceive its lineage as a struggle remains. Its de-stigmatisation and increasingly tenable antiretroviral medication regimes produced real, tangible, bettertreatment outcomes which heralded the evolution of an acute, terminal illness to a chronic condition. The shift to ‘undetectable equals untransmittable’ is one that can feel like victory.

The embodied experience of trauma and the disfiguring fall-out of the disease and its complications belongs to people diagnosed with HIV/AIDS alone, and these are important histories. That category in itself creaks with diversity.^[2] But to further understand what health is when it becomes ill, we must consider the care and treatment it calls for and the shape of its delivery. Care as we understand it today is considered best when it’s mutable, adjustable, and flexible. Person-centred care rolls off the tongue so quickly it’s easy to forget its origins and drivers.^[3] But the way we understand care has a past, and the patient-led, person-centred discourse is younger than we might always remember.

‘You’ve got to remember as well nobody else really cared. Nobody cared, and if they did care, they were too scared to care a lot of the times, so people who in the past might have helped, you really had to take sides. It was really, it felt like the end of every … who knew how quickly it would start? They were saying that it could mutate, you could end up with faster … I mean, I knew people who were diagnosed and died within a year. You just thought, ‘Shit. I’m going to do what I can when I can because…’ Interestingly, pride and stuff took off because why should you give a shit? You could be dead next year. Who cares?’

Care provided for people with HIV/AIDS has changed as dramatically as its defining prognosis. In the beginning it was complex care, physical and psychological interventions targeting staggering physical symptoms in addition to supporting people through the unique circumstances they suddenly found themselves in. The communities afflicted by AIDS as it emerged were already accustomed to stigma: drug users, people with haemophilia, and – most frequently – men who have sex with men, who faced a resurgence of homophobia following the civilrights and tolerances gained through the movements of the seventies, and fought its signifying structures with strategies spanning from direct action to establishing charity organisations to meet their needs in the absence of relevant services. Historian Virginia Berridge situates the divergent politics within the AIDS patient rights movement, its fractiousness and policy legacies^[4]. There is no doubt that the concept of patient rights is integral to the history of AIDS politics and policy, despite the competing ideologies of its contributing movements. Projects sought to empower the subject in whatever way: by reorganising the medical model by promoting clinical trial ethics, by publishing directories of resources, establishing helplines, and by turning to alternative therapies and approaches to diagnosis. This relationship with the medical establishment poses the question of its effect on and daily integration with the delivery of its official care. If the brackets of expert are expanded to enclose the patient and loved ones, then there will be a corresponding effect on the healthcare system and its professionals.

In 2017 Dr Tommy Dickinson conducted semi-structured interviews with 22 nurses, 7 loved ones of people who died of an AIDS-related illness, and 3 people diagnosed as HIV-positive in the 1980s. These valuable accounts highlight the traits, experiences and practices which reproduce the common, daily, and the remarkable as a highly moving oral history collective. Unprecedented conditions destabilised healthcare’s traditional pyramid, the collapse of which could help burst doom-filled media rhetoric and tabloid anxieties, the pervasion of stigma, and find meaning despite working to the timeline of an unpredictable pathogen.Combined with archival work drawn from sources across the UK, the project considers the ‘rise of the expert-patient’ as it integrated into paternalistic, state-provided care. This can be considered adjacently to those activist and voluntarist histories such as those of the Terence Higgins Trust, Body Positive, and ACT UP. By listening to individual iterations of the nursing role between 1981-1996, we follow the relationship between the history of HIV/AIDS across grief, fear, hope, hedonism, and alienation to find many things, one of them being the empowered patient, and another being a special quality of nursing.

In 1985, the Royal College of Nursing (RCN) convened in response to alarmist public discourse to re-centre on the fundamentals of nursing. The RCN produced a report which hoped to standardise ‘safe, effective, and meaningful care’ for people living with HIV/AIDS and emphasised the psychosocial role of the nurse.^[5] The dynamic style of nursing reported in these histories is the rippling of the empowered patient, its partner and palindrome, and constitutes what Dr Dickinson has described as ‘care-crafting’.^[6] Care-crafting is a style of nursing which subverts or reinterprets typical rules, practices or protocols in favour of the unique needs of the individual. The RCN guidelines dictated the versatility of the nurse working in HIV care, yet in practice it was nurses alongside patients who re-articulated the rules and boundaries of care, as remembered by one nurse: ‘every decision you looked at and asked why.’^[7]

‘I think that was the thing with the HIV units, they were much less regimented, and much more focused around what does the patient want. Like, “we’re not going to wake you up at 6 to say you’ve got to have your wash and breakfast, we’ll wait till you wake up and you tell us what you want and we’ll just go and make you some toast. Visiting time was whenever you wanted to go, and you could stay through the night. They’d put a bed out for you. I mean it doesn’t seem so revolutionary now, but then that was very, very different. They’d just say, “Well if you want to stay you can, that’s fine we’ll put out a bed for you.” It’s whatever’s going to make you happy and content really[…]it was just like, “there’s still some cottage pie, do you fancy a bit?”‘

In the earlier days when understanding of transmission routes was especially limited, stigma thrived in unregulated forums, and many patients experienced stigmatised care from health professionals. Propelled by a climate of fear and misinformation, discrimination played out in side-rooms, in the use of gloves without reason, and in imposed restrictions on personal decisions such as next of kin. These were opportunities for nurses to act as an advocate, challenge prevailing assumptions, and question the basis of every clinical choice that mattered. Much of their practice grew from intimate relationships with patients and their loved ones, working with the way that each person identified with the condition, their social circumstances, their relationship to treatment. These relationships were often close enough to call family.

The study is for anyone interested by what constitutes ‘creative care’, and the definitions of the culturally bound roles we play as carer and receiver. A change in the agency of the patient affects that of the professional, and we find that oral histories can help reinstate the lived experience beneath the ever-evolving biopolitical governance surrounding healthcare, AIDS, and its imaginations. The notion of elasticity of healthcare systems and of creative nursing when dictating new boundaries of care where services simply aren’t supporting people effectively is one with enduringly radical potential. A thought which holds a flickering preciousness when encountered by retracing the once fatal rigidity of the AIDS diagnosis itself.

‘I think you can’t really retrace or revisit, and I think those early days were very special because we didn’t know what we were doing.  It was the blind leading the blind and nursing 20 years ago/30 years ago was very different to what nursing’s like now. You know, we had fun. We had mischief. We made it fun and we made it mischief. Now it’s all a little bit too serious, I think, sometimes.’

Laura Savidge is a  mental health nurse living and working in London. 

References

Berridge, Virginia. “AIDS and the rise of the patient? Activist organisation and HIV/AIDS in the UK in the 1980s and 1990s.” Medizin, Gesellschaft und Geschichte 21 (2002), 109-224.

Dickinson, Tommy,  Appasamy, Nathan, Savidge, Laura. “Nursing a ‘Plague’, A History of HIV & AIDS Care, 1981-1996”. Research conducted 2017,  King’s College London; publication forthcoming.

Kruger, Steven F. AIDS Narratives: Gender and sexuality, Fiction and Science. Taylor and Francis, 1996.

Mayes, Stephen and Stein, Lyndall. Positive Lives: Responses to HIV – A Photodocumentary. London: Cassell, 1993.

Royal College of Nursing. The Psychological Support of the Patient with AIDS (February, 1985).

Sontag, Susan. Illness as Metaphor and AIDS and its Metaphors. London: Penguin Modern Classics, 2013.

The British Library. ‘Oral Histories of Personal and Mental Health and Disability.’ Accessed April 2019. https://www.bl.uk/collection-guides/oral-histories-of-personal-and-mental-health-and-disability.

The Well Project. ‘Why Race Matters, Women and HIV.’ Accessed April 2019. https://www.thewellproject.org/hiv-information/why-race-matters-women-and-hiv.

The Health Foundation. ‘Person-centred Care timeline.’ Last modified 2013. Accessed April 2019. http://personcentredcare.health.org.uk/resources/person-centred-care-timeline.

Weston, Janet. ‘Experiences of AIDS in English Prisons’ paper presented to the North American Conference on British Studies, Denver, Colorado, USA, November 03, 2017.

Wojnarowicz, David. Close to the Knives: A Memoir of Disintegration. New York: Vintage Books, 1991.