Psychological Perspectives in HIV Care

An Inter-Professional Approach

Michelle Croston, Sarah Rutter, Michelle Croston, Sarah Rutter

• Publisher: Routledge
• Year: 2020
• ISBN:
  9781351812573
• Edition: 1
• Topic: Medicina
• Subtopic: AIDS e HIV

The care paradigm for people with HIV has shifted from managing progressive illness with a poor prognosis to managing a chronic condition. Despite this improvement, people living with HIV continue to experience considerable stresses, so promoting their holistic wellbeing is a key aspect of long-term care.

This book provides an accessible introduction for healthcare professionals who work with people living with HIV. It is designed to help readers understand how care in practice can be more person-centred and psychologically focused, whilst promoting compassion, health and wellbeing. Topics covered include self-awareness, attachment theories and communication as well as key aspects of providing care for people living with HIV, such as stigma in young adults, neurocognitive issues, the sexualized use of drugs, managing neuropathic pain, and the needs of older adults living with HIV.

Invaluable reading for health professionals working within multidisciplinary teams that provide care for people living with HIV, this book is also a core text for those studying in the area.

1 The good, the bad and the ugly

How do people living with HIV experience care in the health system?

India Amos, Roland Chesters, Angelina Namiba and Merial Rattue

Chapter description

What it is like to live with HIV in the global north has changed dramatically over the last two decades. There have been significant developments in the treatment and prevention of HIV, and the healthcare landscape continues to evolve. This chapter intends to highlight some of the impact of such changes on people living with HIV, who are accessing healthcare in the United Kingdom (UK). Initiating conversations with the contributors to this chapter commenced by asking them to recount part of their story using healthcare services that was particularly poignant, memorable or important to them – what stands out to you? was the question. The good, the bad and the ugly encounters with health and social care came forth in response. Through sharing and discussing some of their helpful and hindering experiences of health services, HIV or otherwise, what could be seen as some of the common psychological challenges associated with living with HIV were also illuminated. This chapter aims to bring attention to the lived experience of people living with HIV and the care they receive; to consider what works – and what does not. The contributors to this chapter have all helped to achieve this aim. Other first-hand accounts of healthcare experiences, published elsewhere, have also been drawn upon.

Reflection boxes have been included throughout the chapter and are an invitation to explore and consider any experiences you may have of providing care for people living with HIV. Perhaps you work in an HIV service. If you do not work in HIV services specifically, it is possible that you might be in a position of working with someone living with the diagnosis. How does the content of this chapter apply to you in the context that you work?

Firstly

Jesse reminds us that ‘everyone living with HIV has a completely different story and a very different approach in how they see and think of their HIV status’. The collection of perspectives here offers an insight into some of the experiences, but not all. That is to say that the issues raised are not exhaustive or necessarily representative of everyone’s perspective. Similarly, as the readers of this chapter, you too will bring a range of unique experiences personal to you.

Reflection box 1: capturing initial thoughts and feelings

Before you continue reading, consider the following:

What comes to mind for you upon reading the title and introduction to this chapter?

What might you be expecting to read about as you move through the content?

Make a note of what you consider could be the good, the bad and the ugly of experiences of healthcare for people living with HIV.

At the time of diagnosis

Consistent across the conversations with the contributors to this chapter was the support required at the time of diagnosis. Irrespective of time since diagnosis, age, sexuality and gender, the overwhelming response to diagnosis has been reported in the literature (Walker, 2019), and speaking to Bella there was an acute sense of the shock and distress that was felt upon being diagnosed:

When I got diagnosed with HIV in March 2008, I was totally devastated and felt that my whole world had been blown apart.

(Bella)

An HIV diagnosis can be sudden and unexpected. In Bella’s case the sensation of her world, as she knew it, having been ‘blown apart’ evokes an image of destruction.

For Jack, a participant in a study by Flowers, Davis, Larkin, Church, and Marriott (2011) feelings of worthlessness and loss were apparent:

Close friends, family, anybody, even new people that I’d meet; I just felt that I couldn’t, I suppose I felt quite, quite worthless because I didn’t have the, [sighs] I felt like I’d lost something, I just found everything so tiring, I didn’t have anything to give, I didn’t feel that I had anything worthwhile to kind of contribute, I don’t know, I was just kind of like shell shocked I suppose.

(p. 1382)

Jack’s sigh is almost audible as you read his account. When an HIV diagnosis is sudden and unexpected, it can be experienced as traumatic. Shock, numbness and distress are commonly cited as initial responses. A 20-year-old participant in a qualitative research study investigating experiences of motherhood recalled the time they were diagnosed with HIV very clearly:

It was a big shock, and things got kinda blurry. I just remember going into my mother’s bedroom and going to bed. I stayed there for like 2 to 3 days. I was diagnosed in my formative years; you’re not really the same person after diagnosis.

(in Sanders, 2008, p. 4)

Similarly, Judith comments on the defining moment she was diagnosed:

I got my positive result and life has never been the same since.

Reflection box 2: response to being diagnosed

The excerpts above provide an insight into the major impact an HIV diagnosis had on them.

Why might the people quoted here have responded in the way they did about being diagnosed with HIV?

A dramatic change was felt by Bella, Judith and the participant from the study by Walker (2019). Making sense of diagnosis seems, for some, to be via the separation of their lives into the temporal categories of before and after the event. There is a sense of who I was, then what happened and who I am now. A key theme developed in the analysis of the experience of receiving a diagnosis of HIV was ‘unwelcome and problematic changes in identity’ (Flowers, Davis, Larkin, Church, & Marriott, 2011, p. 138). This was experienced as an identity crisis for some, in which parts of the self were considered to have died and a mourning process for the lost aspects of identity commenced. The everyday experience of living with HIV can encompass a series of unfolding stresses for the individual, including starting treatment, managing side effects, sharing HIV status with others and anticipating and/or experiencing HIV-related stigma. Together these can call into question the coherence of one’s life and personhood, and can cumulatively constitute a traumatic stressor (Hefferon, Grealy, & Mutrie, 2009). James Meeks and Emma Jones in Chapter 4 explore the impact that HIV has on mental health.

Whilst the current HIV treatment context consists of very effective treatments that enable people, predominantly those diagnosed early in the course of the infection, to live a long and healthy life, diagnosis and starting treatment can nonetheless be experienced as a life-transforming event. This is not to be underestimated. People living with HIV have reported that the way in which HIV results were given to them made the testing process more difficult, upsetting, or disturbing (Hult, Maurer, & Moskowitz, 2009). For one participant in a qualitative research study, the diagnosis was experienced as being made in a ‘scripted and impersonal’ fashion:

I was surprised there wasn’t much conversation … the person who did it just handed me a couple of brochures about places where I could go.

(Hult, Maurer, & Moskowitz, 2009, p. 186)

It could be said that individuals may struggle to comprehend the meaning of a positive test result when they are first diagnosed. In the same study, one participant said:

from that point on, I couldn’t hear anything. I mean, they try to talk to you, they try to counsel you, they try to tell you everything’s okay. I don’t know what they said. I don’t remember. I just remember sitting there going, ‘Uhh … uh, uh, yeah …’ just my mind was just shut down.

(Hult, Maurer, & Moskowitz, 2009, p. 187)

Sarah Rutter and Sam Warner explore the psychological effects of trauma further in Chapter 6.

Noelly’s account of her experience shines a different light on what it is like to be diagnosed with HIV. A found poem has been constructed from Noelly’s interview transcript. Please see Gabriel, Lee, and Taylor (2018) and Amos (2019) for discussion on the process of creating found poetry.

Reflection box 3: a found poem by Noelly

‘What really stands out’

What really stands out is going for my HIV test

not in a bad way

just that I remember

I was really scared

took me a long time before I went

I remember walking in

I was on my own

lining up and getting into the room where the nurse had to take my blood

clearly it said on the sheet HIV

I could see the nurse looking at me

I don’t know whether it was

I would say pity

I could see she felt for me

I was there

you know, really worried

and everything you know

I remember that memory very well

just going all the way up to the hospital

the journey was very long and sitting there all by myself

that kind of stands out for me

Reflective questions:

What is your response to this poem?

Do any of the words, phrases, sections stand out to you?

Note down any immediate thoughts, feelings or bodily sensations.

It is worth noting here the words that Noelly uses: ‘not in a bad way’, she says, when recalling the time of her diagnosis. She remembers it but she seems keen to state that her recollection is not because it was felt exclusively as damaging. Perhaps there is an assumption that the person receiving the diagnosis will respond negatively. Could this be why the nurse working with Noelly looked at her with ‘pity’? The power of diagnosis in transforming self and relationships highlights it to be, as Jutel (2009) deems, ‘a powerful social tool’ (p. 289). There is no doubt that some people experience significant distress in response to being diagnosed. However, it seems it could be harmful if healthcare professionals assume that this will be the case.

Giving an HIV positive test result requires time and skill to provide the emotional support that the experiences shared here suggest are needed. Rayment, Asboe, and Sullivan (2014) report that in an ideal circumstance a confirmed positive test result would be delivered face to face by the team or clinician who conducted the test, and that this would take place in a confidential environment with clear language being used. Watson, Namiba, and Lynn (2019) draw attention to the power of language and provide a useful overview of the preferred language of HIV. Table 1.1 summarises three rules that the authors encourage practitioners to observe.

Table 1.1 The language of HIV

Rule 1: positive words Focus on using positive words such as ‘promoting health’ (two positive words) rather than ‘ending disease’ (two negative words).

Rule 2: person-first language It is important to use language that puts people first. Using language that puts people first acknowledges people living with HIV as fellow human beings.

Rule 3: avoid the language of war Describing HIV in militaristic ways such as immune cells as soldiers fighting HIV, or ending HIV as elimination, killing or the scourge of AIDS or using these words may lead people to think those living with HIV have to be ‘fought’ or ‘eliminated’.

Adapted from ‘The language of HIV: a guide for nurses’ by Watson, Namiba and Lynn, HIV Nursing (Watson, Namiba, & Lynn, 2019); 19(2).

Historically, disclosure has been the termed used to describe the process of telling someone about their HIV status. If you look at the definition of disclosure, it is often referred to as th...