This article explores the Straightpoz participants’ relationship with HIV doctors, as well as their rather different experiences of interacting with the general health sector.
Most study participants were greatly invested in HIV medicine. Faced with the stigma and ignorance surrounding HIV in heterosexual society, treatments provided a kind of refuge and tangible solution to managing HIV and creating a sense of normality in their lives. However, the study findings do not support the emphasis in recent HIV literature on a supposed shift from a traditional doctor-patient model to a partnership model based on joint-decisions and shared expertise.
The partnership model was virtually absent in the participants’ interviews, as was the idea of themselves as ‘expert patients’. Only a quarter of the participants thought it was important to keep up with medical developments in HIV, but only half of those considered themselves well-informed and actively sought out information. ‘I like to know what’s going on, yeah’, Antonio, aged 71, said. ‘I just don’t like to be just a guinea pig’.
Medical information tended to be more important to the participants when first diagnosed, but typically lessened with time. Some found the information too vast and complex, while some wanted to curb the prominence of HIV and move on with their lives. Dean, aged 49, said: ‘I have enough HIV in my life as it is … I tried to tangle with all that stuff initially and … it was like watching a race I wasn’t interested in … I’m not a doctor’.
Many explicitly rejected the ‘expert patient’ model. Tobias, aged 53, explained: ‘I don’t feel I need to read the paper every day and look for HIV treatments … I really can’t see the point. I’m probably getting the best medical care. Why buy a dog and bark yourself?’ Like Tobias, most relied on their HIV doctors to keep up with the latest medical developments, to inform them when necessary, and to act in their best interest. Lydia, aged 44, said:
She’s the expert. You know, so I have trust in her that she’s giving me the right combinations. And I kind of don’t really look into what it is [the drugs] do, because I don’t really need to know. I don’t want to know what the hell all these cells are doing in my body. As long as I’m healthy … I just know that the drugs stop the virus from mutating. They kind of keep it at bay. That’s about as much as I know about it. You know, as long as it does what it’s got to do, yeah, I’ll stick with what [my doctor] says.
The participants overwhelmingly viewed their doctor as the authority on HIV and treatments. In addition, many expressed considerable respect for and trust in their doctor. This comment by Carlos, aged 37, was typical: ‘I really trust my doctor. She knows what’s best for me. She’s shown over time, I’ve experienced that with her. I trust her 110%’.
At first glance, participants seemed to describe a fairly traditional doctor-patient relationship in which expertise was firmly located in their HIV doctor. But closer analysis suggests that this relationship was also different from a traditional model in some important ways. Largely disconnected from the HIV sector and from other people with HIV, most participants had compartmentalised their HIV-positivity to the clinical relationship. Given that their HIV doctor or clinic was often their primary or only contact with anything HIV-related, and given that it was often one of few contexts in which they had actually disclosed their HIV status, the participants tended to place considerable importance on this relationship.
All but one expressed significant satisfaction with their HIV doctors and many spoke very highly and affectionately about them. When asked what they most valued in their relationship with their HIV doctor, their answers centred on a sense of common humanity, rather than on authority and expertise. They referred to qualities such as being friendly, warm, caring, supportive and approachable. The same qualities were valued in allied health workers, such as clinical nurse consultants, dieticians, and social workers. In any clinical interactions, being made to feel welcome, safe and accepted was seen as highly important, and several used words such as ‘home’ and ‘family’ to describe their HIV clinic:
Oh, over the moon mate … It’s like a little family, you know. They’re like my family sort of thing, you know. Yeah, they’re very good … the way they speak to people and — because it’s, well they go out of their way to make people feel welcome and feel at home … They don’t just like come and throws you the medication and say, “See you later. Take it and when you’re finished, come back”, or something (Ratu, aged 43).
HIV is not only stigmatised in heterosexual society, there is also curiosity and assumptions about positive heterosexuals and how they became infected. It is not surprising that many participants placed great value on being treated with respect and dignity by HIV doctors and clinical staff. Antonio, aged 71, praised his HIV specialist because ‘she treats her patients all equal … she treats you as a human being’. Several explained that it was this kind of non-judgmental care that had helped them come to terms with their HIV status:
They’ve just been worth their weight in gold to me … just the confidence they’ve instilled in me … It gives me so much more peace of mind and helps me deal with this virus. So, yeah, I’m over the moon (Victor, aged 34).
I get that sense of warmth and care there … If it wasn’t for them I wouldn’t be here. I wouldn’t have my health the way that I have … So that’s improved my quality of life very much … [T]he most important thing that I’ve always had is my doctor, there at [the clinic]. She’s always been there for me; encouraging me to live a quality life (Carlos, aged 37).
Given the isolation experienced by many positive heterosexuals, and the related emphasis on medicine and everyday normality as a way to manage HIV, the clinical relationship provided a safe and segregated space in which they could engage with their HIV-positivity. ‘I pretend that I don’t have nothing. I’m just living normal’, Mahmoud, aged 32, explained.
Only when I go to the doctor’s for that appointment every three months, that’s when I do everything. And after that, I forget about HIV. I walk out. I haven’t got HIV. That’s it.
Because of the importance of the clinical relationship as one of few social spaces in which their HIV-positivity was attended to and cared for, any dissatisfaction commonly centred on interpersonal dynamics and accessibility. Several participants, who incidentally all went to the same hospital HIV clinic, commented on the clinic’s reception staff:
[T]hey’re just like not very empathetic or sort of quite rude. Like any old receptionist can be. But, you know, I have this expectation that in a place like that when you’re dealing with people who, you know, maybe have this disease, that you should be a little bit gentle and so on. (Ellen, aged 45)
Other said they would like more time with their HIV doctor, or would prefer to see him or her more frequently. Being seen by different doctors in the clinic, rather than by the specialist, was also raised as a concern, partly because they had to contend with ‘too many different opinions’ and partly because it made them feel de-prioritised.
But most were extremely complimentary of their HIV doctor or clinic. The strength and supportiveness of the relationship between positive heterosexuals and their HIV doctors is heartening. But it also makes positive heterosexuals highly reliant on and therefore vulnerable to any changes in primary care. Also, outside of this clinical model, their interactions with non-HIV health services and health workers tended to be more complicated.
Most participants accessed hospital HIV clinics and sexual health clinics for their HIV care. Hardly anyone saw an S100 prescribing GP for both HIV-specific and general health care and therefore had to access a GP for any non-HIV related health issues. The task of establishing a satisfactory relationship with a GP was not seen as easy:
I’d like to find a doctor that I could confide in. But it’s very difficult because my [HIV] doctor, you know, has set a very high standard for the other doctors. So it’s very hard for me (Carlos, aged 37).
Several qualities were considered important in a GP. A good GP was described as someone who was non-judgmental, accepting, open and interested, or as Grace, aged 66, put it, had ‘no inhibitions about the HIV’. Basic medical knowledge of HIV was seen as another desirable but rare quality in a GP, with many participants saying that GPs ‘know nothing about it’ and tended to ‘blame everything on HIV’. Gavin, aged 48, joked: ‘“You broke your toe? Oh that must be HIV-related”’. Those who had found a GP with at least some of these qualities were keen to maintain this relationship:
I’ve chased him around through a few medical centres … I don’t like disclosing to a new doctor every time I go to the doctor’s. [Doctors] have to know this. You know, he’s the doctor. So that’s why I try and chase my doctor around … I’ve had him since before diagnosis (Dean, aged 49).
Disclosure of HIV to GPs was a vexed issue for most, partly due to privacy concerns and partly due to past interactions with GPs and other health workers. Many participants felt there was widespread ignorance about HIV in the general health sector. All but three said they had experienced negative or discriminatory treatment by a GP or health worker. Gavin, aged 48, said: ‘When I got told I had HIV, I got told that no health care professional was supposed to treat you any different. That’s a load of rubbish’. Similarly, Lydia, aged 44, observed:
Sometimes I find if you do disclose … it’s amazing, even in the medical profession, how the change happens. It’s just, you know, it just blows me away. I mean these are doctors for God’s sake … So yeah, there’s still a lot of ignorance and fear. But I can understand the fear. I can understand that kind of fear. But I would have thought that doctors might have known more.
Several described what they perceived as ‘discriminatory’, ‘uninformed’ and ‘unprofessional’ treatment by GPs or hospital staff, including breaches of confidentiality, being treated differently from other patients, or being told they had to be put last on the surgery list to protect other patients, as recently happened to Sabrina, aged 46:
I said, “What do you mean?” I said, “I’m the one with the low immune system”… I want to know why in 2006 this has happened. Why are they, you know, why are they treating me like a leper when I should be the one that’s protected?
Others described ‘frosty’, ‘judgmental’ or ‘moralistic’ attitudes on the part of GPs and health workers. Victor, aged 34, said:
I’ve seen a few, you know, that definitely haven’t really got a good attitude … Just, yeah, sort of the way they look at me. The standoffish sort of attitude. I definitely know there’s something there inside their mind when they see the HIV bit.
Others mentioned being treated with suspicion or curiosity by GPs or hospital staff, or having assumptions made about how they became infected. Antonio, aged 71, who had a long history of medical encounters with various specialists, objected to ‘nosy questions’:
They want to ask you how long you’ve had it, how did you get it, have you been with men or have you been with prostitutes. It’s irrelevant. I’ve got it, I’ve got it. It’s one way or the other. I don’t have to be asked those questions. So when I go to a doctor I want him to treat me, from what the referral my GP gave him. I don’t feel like to have to be interrogated.
While nearly all said they had encountered judgmental treatment by GPs or health workers, those who had been positive for a long time were also keen to point out that things had changed for the better. Meagan, aged 47, noted the recent clinical change from using rubber gloves with some patients to hand washing after each patient: ‘I’m delighted with that. It makes me feel a little less like a leper’. But the study findings also suggest that this process is incomplete and that more or better education about HIV among health workers is still needed.
Asha Persson is a Research Fellow at the National Centre in HIV Social Research at the University of New South Wales.
