VOL: 97, ISSUE: 01, PAGE NO: 34
Martin Jones, MSc, RGN, is a clinical nurse specialist in HIV, Eastbourne and County Healthcare NHS Trust
Recent years have seen many advances in HIV care. These include introducing viral load testing (a measure of the level of viral activity in a person) and highly active antiretroviral therapy (HAART), which involves patients taking a combination of three or more anti-HIV drugs. Viral load testing has improved the effectiveness of clinical monitoring and decision-making; the introduction of HAART has reduced HIV mortality in the UK and the number of new diagnoses of AIDS (Public Health Laboratory Service, 1999).
As the advantages to patients of using HIV services have increased, so has the need for nurses to remain abreast of the health promotion priorities of people living with the virus.
People’s experiences of illness lend themselves to qualitative inquiry (Strauss and Corbin, 1990). While people living with HIV may not define themselves as ‘ill’, qualitative methodology uncovers the complexity of their definitions of health and strategies for health promotion.
In 1999 I conducted qualitative research involving a focus group and 10 interviews. The focus group was made up of volunteers who attended a local support group for gay men who had HIV. The interviews involved 10 volunteers recruited from among local patients who used Eastbourne and/or Brighton HIV services. The interviews and group discussions were taped and transcribed.
Results and discussion
Content analysis revealed that the health promotion priorities of participants differed at three stages in the course of HIV infection - when first diagnosed, before taking antiretroviral therapy and when taking antiretroviral therapy - and could be linked to the ‘cycle of change’ model of health promotion developed by Prochaska and DiClemente (1986). In their work with addictive behaviours, Prochaska and DiClimente found that most people go around a cycle of behaviour several times before achieving long-term or permanent change. The stages of the cycle are shown in Box 1.
Accepting and adjusting to the diagnosis was obviously a common theme among participants: questions such as how, why, when and from whom recurred. These are issues that health advisers and nurses can help to address in counselling.
One patient said: ‘When I first realised I had it, I felt for sure I was going to die. And I guess I was just very depressed at first and couldn’t deal with it at all.’
Getting good information about the condition was seen as an early priority and HIV services were identified as a key source of information. ‘I went out of my way to find out everything I needed to know about it. I read up on all the books and even got all the information off the internet - so I wasn’t ignorant, basically.’
Deciding who to tell is a difficult issue, but one that nurses can help patients address. Some of the interviewees had lost friends through the complications of not telling, some feared the consequences of telling their friends and families, while for others valuable social support had resulted from confiding in other people.
‘I have got a good selection of friends, from among people I’ve told, and they help me a lot. If anything happens, I can turn to them and we can all sit down and talk about it. There is nothing worse than bottling it all up inside.’
Regular monitoring was a vital priority of participants not yet requiring combination therapy. This was a departure from earlier pre-HAART studies in which ‘long-term non-progressors’ were much less likely to attend clinics and even felt that this independence contributed to their health (Remien et al, 1992; Troop et al, 1997).
‘About once every three months you go for a blood test, have a general check-up and get your results. It’s important. It lets you know how you are doing and lets you detect early signs if things are going wrong.’
However, while these participants consistently expressed the importance of monitoring, good information and social support, they were ambivalent about other health-promoting activities such as diet, smoking and exercise.
‘I really have no truck with people who go on health binges and drink nothing but carrot juice and whatever. I still eat chocolate and still smoke.’
In these situations, health promotion efforts are probably best directed towards those areas of specific interest and motivation, such as getting good information and discussing the implications of test results. But living with HIV clearly has many similarities to living without it, including the power of positive thinking.
‘If you get up in the morning and you feel low, think of it as a morning, not forever. If you have to do this thing, get up and do it, even if you have to do it halfway. But do something. Never let the negativity get on top of you.’
This illustrates the importance of what earlier researchers called ‘a fighting spirit’ (Friedland et al, 1996) or a ‘will to live’ (Tsevat et al, 1996). ‘We can all feel sorry for ourselves at times and that’s allowed. It’s not a bad thing or anything. We all feel like it, not just people with HIV like myself, every Joe Bloggs.’
Establishing a daily routine that includes taking medication was an important priority for this group: ‘No matter who explains the tablets to you, you have to learn yourself. Your own body will dictate how and when it’s best for you to take the tablets. And no matter what it says in the manuals, it’s trial and error to a certain extent.’
Unlike top-down approaches based on compliance, taking specialist advice and incorporating it into personal routines can bring about personal control, leading to greater adherence. By providing continuity of care, nurse specialists in HIV are ideally placed to help with this.
Participants who were taking HAART were much more inclined to take a holistic view of health. In the terms of the cycle of change model they were further around the cycle than the other participants - contemplation, decision and action were all evident.
‘Now I have a much better diet.’
‘Everybody can afford to eat sensibly, it might just require a bit of effort.’
‘A supportive family makes you want to get on.’
‘As long as I see my kids grow up.’
‘A lot of my quality of life comes from my partner.’
But there remained great ambivalence around smoking.
‘It is all very well saying ‘give up smoking’, but with someone perhaps only newly diagnosed, giving up smoking might stress them out even more.’
‘I know one day this will kill me, but so could the fact that I smoke 10 cigarettes a day.’
‘Will smoking actually affect being HIV or not?’
The value of the cycle of change model is clear: when it came to smoking, participants were at different stages of precontemplation, contemplation, action, maintenance and relapse. Identifying a patient’s present stage of motivation can help nurses adopt appropriate health promotion methods. Indeed, the model is very popular in smoking cessation training.
Using NHS HIV services was a priority for all the participants, although specific priorities changed during the course of their HIV infection. The long-term non-progressors had made successful psychological adjustments to their diagnosis and had effective social support.
However, in terms of the cycle of change, they were precontemplators for many areas of health promotion. They identified little else apart from monitoring as contributing to their health. Indeed, they suggested that they actually coped better by refusing to make concessions to their condition.
Later on in the course of HIV infection, participants took a more holistic view of health and were more likely to be interested in health promotion on a broad range of topics.
Understanding this, coupled with the change model, can aid nurses in their assessments of patients, helping people with HIV to direct their health promotion efforts appropriately.
- This research was originally presented at the National HIV Nurses Association 2nd National Conference in June 2000, winning the Krattiger-Rennison Trust Award for ‘making improvements to patient care underpinned by good research evidence’.