Thematic analysis identified 7 major themes associated with testing for HIV in people aged ≥50 years (Fig. 1). Each theme is discussed below and illustrated with quotes from interviewees.
Theme 1: Experience of the early campaigns
Experience of early HIV/AIDS campaigns underpinned or overlapped with many other themes identified, and was mentioned by almost every participant regardless of demographic group. Participants commonly described how their experience of early HIV/AIDS public health campaigns shaped their beliefs and behaviours. However, the impact these early campaigns had on participants depended on how they identified with the message.
Although heterosexual men and women living in the UK at the time reported being aware of these campaigns, early depictions of HIV as a gay disease left them feeling removed from these messages. Conversely, gay and bisexual men living in the UK and black Africans living in Africa at this time were aware that they belonged to a high risk group as a result of these campaigns. Consequently, these groups discussed how this had reduced their sexual risk taking behaviour or encouraged them to test for HIV. However, this effect diminished once these early campaigns ended:
I was a teenager in the 80s when AIDS first came along. And um, well, publicly anyway. And um, all the horror stories and adverts on TV and on the billboards, and on postage stamps, and, “don’t die of ignorance,” there was all that thing. So, I was brought up with that and I was … I always thought I was really careful. But then as the years go by, maybe you are less careful, you know. [John, 53, White, Gay]
Further, gay and bisexual men, and black African participants commonly described the loss of loved ones at this time, which may be reflective of a higher prevalence of HIV within their communities:
Unfortunately for me in southern Africa, er, it was a proper plague, literally a plague. So you, erm, you had to attend a funeral every week, every weekend, someone who you knew would have passed away. Someone you knew was ill in hospital, so it was like you finished work on a Friday, you know Saturday and Sunday I’m visiting someone in hospital or you were going to bury someone. So it was a real sort of like plague. [Daniel, 55, Black African, Heterosexual]
Universally though, participants discussed their experience of early campaigns in terms of how they shaped their views of HIV. Heterosexual men and women and bisexual men (any ethnicity) commonly reported having no other exposure to HIV-related information since these early campaigns, which tend to be confined to gay venues and media. As a consequence, they held onto preconceptions about HIV until they received their diagnosis. Many felt that a diagnosis of AIDS was a “death sentence” and built a stereotype of who might be at risk of HIV, or what kind of person would be most likely to acquire the infection (Theme 4). For example, many still felt that HIV was a “gay plague” or something which affects people living a certain type of lifestyle; “drug users”, “wrong doers” people without “morals”, “promiscuous” people or people who engaged in “dirty” or “seedy” sex:
I suppose it’s because they still think of it as this is the sort of thing that doesn’t happen to me and it only happens to people who have you know, people who are promiscuous, people who have drugs problems or people who are gay and they just think “It won’t happen to me, I’m just an ordinary person” [Adam, 59, White, Heterosexual]
Theme 2: HIV Knowledge prior to diagnosis
Poor HIV knowledge prior to diagnosis was mentioned by all participants. They felt that in general people were not well informed about HIV, particularly about advances in treatment. There was agreement that a lack of HIV-related health promotion beyond gay venues and media facilitated this ignorance - particularly among heterosexual men and women:
I was very surprised at how more advanced medical treatment had come since I last thought about HIV. I was amazed that my first reaction was “Oh god I've got my grandchildren, I can't feed them, I can't drink out of the same cup as them or they can't out of me”, and I was very concerned about that [Penny, 75, Heterosexual]
In some cases, participants reported that they did not even know where they could test for HIV. Additionally, several participants felt no need to educate themselves about HIV as they did not think it was something they needed to be aware of (Theme 4):
I never put myself in a category to ever come in contact with HIV, so I’d never educated myself on HIV. I didn’t feel the need to, ‘cause I was never at risk as far as I was concerned [Nicolas, 52, White, Heterosexual]
Conversely, some participants, particularly gay men, felt they did have up to date HIV-related knowledge prior to diagnosis and some reported actively seeking information as a way of keeping themselves up to date. Two heterosexual participants also felt they had up to date knowledge but this was due to work-based training, not because of an active desire to keep up to date.
Knowing where to access HIV-related information or personally knowing people with HIV in the time leading up to their diagnosis was only reported among gay men. Additionally, some gay men felt that people had generally become more aware of HIV in recent years, but this was not mentioned by heterosexual participants:
More recently I mean it’s erm, well people are far more educated about it now. Erm, most people are pretty cool about the whole thing, I don’t think there’s the hysteria, or the hysterics or the neurosis of what people had early on [Chris, 55, White, Gay]
Most participants believed that people living outside high prevalence areas, heterosexual people or older people, who were not traditionally highlighted as risk groups for HIV (Theme 1) had poor HIV knowledge. There was also the belief, particularly among heterosexual participants, that someone only learns about HIV after receiving a positive diagnosis:
No-one knew what HIV was when it was killing people, em, but the first people to get it, I believe, were gay people and that’s what they put it down to. They, you know, and it stuck, and I think it always will, I don’t think it will ever go away. The only time it goes away is if you get it. That’s when you lose that ignorance of it then. [Nicolas, 52, White, Heterosexual]
It was reported that a lack of up to date information, particularly of medical advances, resulted in fear. In some cases - particularly, but not solely among heterosexual participants - it was felt that this fear could lead to test avoidance:
Quite frankly one of the reasons that I spose I didn’t get tested is I was scared to go and get tested [Dennis, 52, White, Bisexual]
Almost every participant felt there was a need for updated HIV-related information to be more widely available. They felt that education campaigns needed to be attention-grabbing, but should be different to the early campaigns which brought fear:
That's how it works with all sorts of things isn't it, until your attention is actually focused on it. You don't really read the information that is coming, actually enough to ... you have to make the information quite ... to grab people's attention quite dramatically in order to get them to take notice. You can't do it passively. [Simon, 61, White, Gay]
Theme 3: Presence of symptoms and symptom attribution
Whether a participant had experienced physical symptoms in the time leading up to their diagnosis, and what they attributed any symptoms to, influenced decisions to test for HIV.
In the time leading up to their HIV diagnosis, most participants had been unwell, and many had had multiple appointments and/or tests in primary or secondary care. This indicated that there were several missed opportunities for testing. Some participants felt that a lack of continuity of care was a barrier to HIV testing: no one coordinated their care and their doctors treated presenting symptoms rather than taking a full history. This was particularly common in participants who regularly saw more than one clinician:
The lack of consistency means that not one person will sit there and say “Well we’ve tried this, we’ve thought of this”. Nobody did that. It was just: you present, you’re given five minutes, let’s think what the most likely thing is and as I said I was given so much medication ... by various, I had to get, you know, one of the season tickets for prescriptions because they were just prescribing different stuff constantly to me. [Jenny, 57, White, Heterosexual]
Participants in all demographic groups indicated that when their clinician had not mentioned HIV, or had attributed their symptoms to another cause, this presented as a barrier to testing. Because patients trusted the clinician and their knowledge, they did not feel the need to consider other potential causes of disease. However, one participant turned to the internet in order to self-diagnose when she felt her clinician did not take her symptoms seriously:
I also looked it up on the internet and the only thing for weight loss was cancer or AIDS and I, I said to them, you know, “These are the only two things I can have”, and they said that I didn’t have it. [Barbara, 57, White, Heterosexual]
Universally, participants attributed their symptoms to another cause which presented as a barrier to seeking an HIV test. Common symptoms reported by patients were coughing or breathlessness, exhaustion, unexplained weight loss, raised glands, rash, night sweats, vomiting, diarrhoea, herpes sores, swollen joints, loss of appetite, or a general feeling of malaise. In most cases, participants misattributed symptoms to recurrent chest infections or pneumonia, a general cold/influenza, being run down, or cancer. There were several different reasons why participants misattributed their symptoms.. Some felt that although they had engaged in risky behaviour in the past, presenting symptoms were too long after the risk to be HIV-related. Although this was not confined to one demographic group, it was always reported in participants who were not aware that HIV can be asymptomatic or of which symptoms could indicate HIV. Some participants attributed their symptoms to something that was not serious, particularly if they felt well leading up to their diagnosis or prior to symptom onset. Further, when symptoms stopped or when prescribed medications alleviated them, participants did not associate them with HIV. Attributing symptoms to ageing was another sub-theme reported across demographic groups, particularly in patients who reported generalised symptoms such as those associated with a common cold or chest infection, or when these symptoms persisted over prolonged periods:
I just assumed it was a very bad cough. I mean, I think prior to that I'd had a cold and rather foolishly I just thought I was getting older and that's perhaps what happens as you get older, you don't shake these things off in the way that you do when you're younger. [Simon, 61, White, Gay]
Having experience of other health conditions was another barrier to attributing symptoms to HIV. This presented as either having personal experience of a particular health condition and therefore attributing symptoms to this, or having a family history or friend/loved one who had experienced a health condition with similar symptoms, such as cancer or gout
Having had a family of erm, with cancer er, obviously that was probably the first thing in my mind more than HIV then. [Simon, 61, White, Gay]
Some participants suggested that educating people about the symptoms of HIV could increase uptake of HIV testing:
If I’d known that you can have HIV without displaying symptoms I would have still, I would have taken the test instead of like waiting until I had a referral for it. [Oliver, 55, White, Gay]
However, not all participants had experienced symptoms. Some either felt healthy prior to their diagnosis, or did not experience symptoms at all; both were barriers to seeking an HIV test:
Most of the time if people have ... are diagnosed with cancer, it’s because they’ve not been feeling very well. Do you know what I mean, so you’re pushed to go, not because, “Oh I feel fantastic today, I think I’ll go and have a HIV test” [laughing]. You don’t think like that do you? [John, 53, White, Gay]
When participants did experience symptoms which either they or their clinician felt were related to HIV, this led to HIV testing. However, this tended to happen after alternative avenues had already been explored and tests for other potential causes had already been performed.
Theme 4: Risk and risk perception
Low actual or perceived risk was mentioned by every participant, and resulted in a lack of motivation to seek testing. Heterosexual and bisexual participants additionally felt that they were not the kind of people at risk of HIV:
If you live a certain lifestyle, if you’re an intravenous drug user, or you’re openly gay or whatever maybe you are at higher risk. But I didn’t, I’m neither of those things, so I didn’t think, I didn’t put myself in the category of being at risk I suppose, you know you just don’t do you? [Adam, 59, White, Heterosexual]
Every participant talked about the kind of sex or the type of person who would be at risk of HIV. Commonly this was reported as people who were “gay”, “drug users”, “promiscuous” or people who had “wild” and “unprotected” sex with numerous casual partners, or had risky sex over long periods of time. Not perceiving themselves as fitting the stereotype meant they did not perceive themselves to be at risk of HIV. This seemed to be reinforced by the perception that clinicians also stereotyped them as being low risk, and therefore did not offer HIV testing:
I don’t fit into the demographic, do I? I’m not a young, I’m not a gay person, I’m not African, I’m not any of those things am I? In their mind I’m just a middle aged ... I think they thought I was a middle aged hypochondriac to be honest [Jenny, 57, White, Heterosexual]
There was also universal agreement that older people were at less risk of HIV, either due to a change in lifestyle or due to a perception they are more sensible than younger people. Being in a long term relationship added to the perception that older people were at less risk, a sub-theme more commonly reported among heterosexual participants. However, there was a sense that there had been a change in risk in recent years, mainly due to increasing rates of relationship breakdowns, or the emergence of online dating sites/apps.
Additionally, several participants reported trust within a relationship as important to their perception of risk. Participants who felt their partner was not at risk of HIV because they were “clean” or “nice” did not feel at risk. It was felt that if a partner were positive, then participants trusted them to disclose this or protect them by taking precautions:
I had trust in anyone I was involved with, I trusted them, but in hindsight, I shouldn’t have trusted them, because I didn’t know what they were up to, on their nights out with their friends, I wasn’t involved. [Duncan, 80, White, Bisexual]
Unlike trust which was not confined to one particular demographic group, mistrust was more common among black African participants. Within this group, perceived gendered power differentials within a relationship meant the man would ultimately have control over deciding whether to test. Fear of how a test might harm the relationship meant women did not want to seek a test even if they felt at risk:
That’s also part of our upbringing to a certain extent. The male is a dominant, he does, he’s in charge of whatever is happening, so if you want the relationship you’ve gotta do what he says you know which is unfortunate. I understand that, it’s totally unfortunate, but yeah in our sort of like society you can get away with stupid things like that. Er, “I’m the dominant, this is what we’re gonna do” [Daniel, 55, Black African, Heterosexual]
Denial of risk or apathy were other common sub-themes, although much less common among female participants. This tended to translate either to total denial of risk or weighing up a potential risk of HIV against the benefit of unprotected sex. Closely related to this was a feeling of invincibility, which was most commonly reported in gay and bisexual men. Awareness of belonging to a high risk group (Theme 1) and having lived for so long without contracting HIV left these participants feeling they had a successful prevention strategy. This was reinforced by having HIV tests that had always previously been negative:
There is a certain arrogance that comes from having gone through several decades and not contracting it and saying “Well you've got everything, you know you've got things set up right”. Suddenly you find you haven't. [Simon, 61, White, Gay]
Theme 5: Generational approach to health and sexual health
A generational approach to health and sexual health was common. This fell into three main sub-themes: how people of their generation approached healthcare and how they prioritised their health; how they felt talking about sexual health/HIV testing; and how the relationship with or personality of the healthcare provider impacted on how they might approach these issues.
Approaching healthcare and prioritising health
Some participants, mainly men, felt that older people do not go to the doctor unless they are unwell. However, there was a general view that health screening in older age was common, for example for prostate or breast cancer screening, or for over 50s health checks. As a result they felt more likely to take control of their own health, or be more readily encouraged to test or screen:
My sister and a close friend of me, encouraged me to get, I was about fifty or whatever, encouraged me to go and have you know, a sort of fifty thousand mile service if you like. Go and see the GP, and have a few checks done and I think we’re all encouraged to do that, prostate and other things at that age, and err you should do. So you’re looking after your general health, you know, as you’ve reached obviously well into middle age by then. [Dennis, 52, White, Bisexual]
However, participants tended to worry about things other than HIV, feeling that at their age sexual health was not a priority. They tended to focus on things they knew from targeted health promotion messages or through experience of friends/loved ones. Some participants assumed any blood they had given in either primary or secondary care had been automatically tested for HIV. Further, female participants felt that there was a loss of contact with healthcare in terms of sexual health in older age as the menopause meant they no longer needed to attend for contraception:
The perception for me would be that’s an add-on to those conversations you have around when you… you know go on the pill or… yeah and I haven’t had that sort of conversation with anybody for a very long time. [Jenny, 57, White, Heterosexual]
Talking about sexual health/HIV testing
Although some participants felt talking to a clinician about sexual health and HIV testing was potentially embarrassing, there was agreement across all groups that they would not be offended if a HCP brought up this topic of conversation or offered them an HIV test, and most felt they would always agree to a test if it were offered. However, there was a feeling that there was a potential for other people to be offended:
I would never have been upset that somebody had done an HIV test on me with or without my permission. But I know there are some people who have got hang ups about this and they would have felt insulted. So it is not an easy one to get right. [Simon, 61, White, Gay]
Almost all participants felt that there were generational aspects associated with feeling embarrassed to talk about sexual health, which included a lack of sexual education in school, or thinking about sexual health in terms of contraception rather than disease following the sexual revolution. Perceived stigma around gay sex, guilt around sex outside of a long-term relationship or feeling sex was not expected in older age also led to embarrassment:
If you ask my sons who are in their forties, erm, whether they thought their parents still had any sexual activity, they'd be absolutely horrified. Erm, again it is slightly a generational thing. Erm, as you get older people don't expect you to do or to want to do that sort of thing. [Joseph, 68, White, Heterosexual]
Sexual health not being related to the appointment also made it more difficult to talk about sexual health. Conversely, many participants felt that a HCP may feel uncomfortable having a conversation with an older person about sexual health rather than the patient. However, many felt it was the doctor’s duty to ask, and trust in clinicians’ judgement meant participants would generally be happy to test for HIV should the HCP feel it was necessary.
Relationship with or personality of the HCP
Despite these barriers, some participants reported facilitators to having a conversation with a HCP around sexual health. This included the HCP initiating the conversation, how the topic is approached by a HCP, or HIV testing being part of other screening. Although not all participants felt a relationship with a HCP was important, the majority either valued a relationship or valued a HCP who was non-judgemental and personable. Although some did value a long-standing relationship, some talked about relationship in terms of “rapport” which might occur even if they did not know the HCP previously:
You can actually go straight to a locum Doctor and feel absolutely put at ease within the first five minutes, it’s obviously one of those things that generates from the Doctor and from the patient, it’s a sort of two-way thing sometimes. [Chis, 55, White, Gay]
Equally it was felt that the personality of the HCP or a bad relationship meant the participant would actively avoid a conversation around sexual health. However a few men reported a long-standing relationship with a HCP might make it more difficult to discuss sexual health, opting instead for a sexual health specialist rather than a general practitioner (GP):
There’s definitely a lot of people that would struggle to do that, even in front of a GP, and possibly more in front of a GP they knew quite well, they’ve been visiting regularly, to start coming up with a topic they never, you know, divulged before, probably extremely hard work [Dennis, 52, White, Bisexual]
Theme 6: Stigma
Stigma was mentioned by all participants: most commonly in terms of how a person with HIV might be perceived, and stereotypes of high-risk individuals. Participants from all demographic groups felt shame or blame surrounding their diagnosis and as a result feared judgement by friends/family, colleagues or HCPs. The perception that people consider HIV a disease of gay men or ‘dirty’ people was a source of stigma common among heterosexual and bisexual men. The association of gay sex being abnormal or wrong was strongly related to this:
The stigma that’s been put on, “Oh, you’re dirty ‘cause you got it, ‘cause, you know, you’re dirty, gay people”, and it’s, you know, that’s, it’s just the way it came about in the 80s when it started and it’s, it, the stigma stuck and I think it will always be there myself [Nicolas, 52, White, Heterosexual]
Fear of how they would be treated by other people in the light of an HIV diagnosis and resulting social isolation were also described. However, this was more common among female participants, particularly black African women. Female participants also mentioned how stigma might negatively affect current or new relationships.
Additionally, stigma translated into how people felt about using sexual health services. They worried about what the need for sexual health services would say about them and how this would be perceived by others. As a result, many felt uncomfortable using these services, especially when they were clearly labelled as a “sexual health” department, and many feared being seen there by people they knew. However, this was more common among heterosexual participants:
You’re sort of always looking around the room in case someone you know walks in, then they go, “Oh, I saw Nicolas up the Sexual Health Clinic”, you know, then before you know it, rumours go round and that’s what I’m scared of [Nicolas, 52, White, Heterosexual]
For heterosexual participants, the sexual nature of HIV meant it was viewed as socially unacceptable. Gay participants discussed how HIV was different to other sexually transmitted infections (STIs) which were common and easy to catch. An association of HIV as a gay disease or contracted through very high-risk sex resulted in stigma unique to HIV. The treatability of STIs versus the long-term nature of HIV also influenced stigma:
I think because, er, Chlamydia or Gonorrhoea they know that the ... cleared up straight away with tablets and that’s it, they’re done and dusted, they’ve had their, erm, antibiotics so they’re done with that, but I think with HIV it’s because it’s a long term thing and I think that’s what people, that’s what worries people [Oliver, 55, White, Gay]
The majority of participants, regardless of demographic group, perceived there to be an added stigma of being diagnosed with HIV in older age. This was closely related to sex not being expected in older age, particularly high risk sex such as sex with multiple casual partners, which was commonly associated with HIV acquisition. Further, it was felt that older people should know better than to contract HIV, particularly considering they lived through the early era of HIV.
Participants who had experience utilising sexual health services felt that these services were not set up for older people, but instead catered mainly for the needs of younger people:
Making an appointment is easy enough and the staff are always very good but I do sometimes feel, particularly when it is a crowded waiting room and you are with sort of 18 years olds and you are sitting there thinking, well you assume they are thinking “What is this old boy doing here”? [Simon, 61, White, Gay]
Theme 7: Type of testing and testing venue
The type of HIV testing, such as targeted or routine testing, and the testing venue were both commonly mentioned as important factors associated with testing. Although there was near universal agreement that a test would be accepted if offered, the way it was offered and the setting in which it was offered were important. Participants across demographic groups valued confidentiality regardless of the testing venue. Having a service which was simple, easy or quick were also valued attributes, although was much more commonly reported among gay men.
It was felt, mainly among gay men, that there were benefits of a specialist service and as a result they felt sexual health services were appropriate venues for HIV testing. However, many participants across demographic groups felt general practice would be the most appropriate place for older people to test for HIV. Because participants rarely felt at risk of HIV and therefore did not generally seek a test, the majority felt the most appropriate facilitator to encourage testing would be to add HIV testing into other general screening, making the most of existing clinical contacts. It was felt that this type of screening would become acceptable to patients, normalising HIV testing much in the same way people get used to screening for other conditions such as bowel cancer:
People would get more and more used to it, it’s like anything new isn’t it people, you always get people who say, “Oh I’m not coming back for that, I don’t fancy that”, but you know but generally people would eventually start to come round to it and just go “Yes it’s just another routine check” [Adam, 59, White, Heterosexual]
Participants across demographic groups felt that adding HIV testing into annual health checks or “well man/woman” screening would be an appropriate method to specifically target older people to screen for HIV. Further, it was felt that any blood samples taken should be routinely tested for HIV, although this was more commonly mentioned among gay men.
Offering HIV testing to everyone regardless of their actual or perceived risk was felt to be a facilitator. This was in contrast to targeted screening which some participants felt could cause a patient to feel singled out. Additionally, several participants from across demographic groups felt it was appropriate to test all patients for HIV without prior consent:
I would make it, make it mandatory, that anyone having a blood test for any reason, that HIV is included in that blood test. [Duncan, 80, White, Bisexual]
Most participants felt that home testing or sampling would not be appropriate. Many did not trust the process either in terms of its accuracy, or in how confident they would be in performing the test themselves. Some reported feeling more confident having a face to face interaction with a clinician both to make sure the test was done properly and to be in a safe space should the test come back positive:
I think it’s very dangerous, someone sitting at home, getting an HIV result in front of them, saying “Positive”. [Dennis, 52, White, Bisexual]
Some participants offered suggestions for alternative HIV testing venues. Although gay men acknowledged that outreach in gay venues already existed, some participants suggested offering testing through community pharmacies, through the workplace, or promoting testing through online dating websites.