Research and analysis

HIV prevention barriers and facilitators: findings from qualitative interviews among people diagnosed with HIV, March 2021 to July 2022

Published 17 December 2024

Applies to England

Main messages

This study explores the experiences of and attitudes towards HIV prevention among people newly diagnosed with recently acquired HIV and people who recently received a late diagnosis in relation to access and uptake of condoms, HIV pre-exposure prophylaxis (PrEP) and HIV testing. The main messages are as follows.

In total, 35 participants were interviewed between March 2021 and July 2022 (26 individuals who had recently acquired HIV and 9 who were diagnosed late). The main barriers to HIV prevention (condom and PrEP use) highlighted by people diagnosed with recently acquired HIV were:

• low awareness and knowledge of HIV and PrEP, compounded by poor perceived visibility of HIV prevention campaigns resulting in low-risk perception
• poor mental health
• HIV-related stigma
• relationship dynamics
• missed opportunities for HIV prevention in healthcare settings

The main barriers to testing among people diagnosed late were:

• low awareness of HIV risk and how to navigate the healthcare system
• missed opportunities for HIV prevention in healthcare settings
• absence of discreet testing environments
• HIV-related stigma

The findings will inform the new HIV Action Plan for 2025 to 2030 and, in particular, strengthening of HIV prevention interventions aimed at reducing HIV transmissions and late HIV diagnoses and accelerating progress towards the government’s ambitions to end HIV transmission in England.

Background

Substantial progress has been made in reducing annual numbers of new HIV diagnoses first made in England between 2019 and 2023, particularly among men exposed through sex between men; however, with the current trajectory, as described in the HIV Action Plan monitoring and evaluation framework, it is highly unlikely that the HIV Action Plan 2025 target of a 80% reduction in new diagnoses will be met for any population group. Inequalities in access to HIV prevention interventions, treatment and ongoing care, quality of life and stigma are widening across most demographic characteristics, in particular, age, ethnicity, gender identity and exposure.

New HIV diagnoses first made in England fell by 12% from 2,801 in 2019 to 2,451 in 2022 but rose by 15% to 2,810 in 2023. Most of the increase in HIV diagnoses between 2022 and 2023 was among adults exposed through sex between men and women, a (51% increase among men and 44% increase among women) and people living outside London.

In 2023, among the 2,286 adults with an information on a CD4 count within 91 days of diagnosis, 923 (40%) were diagnosed late. This represents a 3% increase in the number of late diagnoses from 896 in 2023. As with all new HIV diagnoses, inequalities persist in the trends for late diagnoses. The highest proportions of late diagnoses in 2023 were among people aged 50 years and over (53% among those aged 50 to 64 years, 55% among those aged 65 years and over), men exposed through sex with women (51%), and people of Black (44%) and Asian ethnicity (43%).

Working towards the government’s target of zero HIV transmissions by 2030 and reducing inequalities in HIV prevention and treatment, in 2018, the UK Health Security Agency (UKHSA) introduced enhanced surveillance of people newly diagnosed with HIV (Surveillance of HIV Acquired Recently: Enhanced, also known as SHARE) and those diagnosed late (Late HIV diagnoses EnhAnceD Surveillance, or LEADS).

A range of evidence-based tools are available to prevent HIV acquisition and to facilitate prompt diagnosis including condoms, PrEP, post-exposure prophylaxis (PEP) and HIV testing but HIV transmissions and late HIV diagnoses persist in England.

HIV testing is provided to anyone free of charge on the NHS in sexual health clinics and other healthcare settings. Home testing and self-sampling kits are also available widely across the country. British HIV Association (BHIVA) Adults HIV testing guidelines provide recommendations for HIV testing, including new registrations in general practice in areas of high and very high HIV prevalence (2 to 5 and less than 5 per 1,000 population for people aged 15 to 59 years).

In 2016, Public Health England (now UKHSA) and NHS England launched the HIV PrEP Impact Trial. HIV PrEP is a daily antiviral medicine that has been proven to be highly effective at preventing HIV transmission. It can either be taken every day or on demand, for example, before and at least 2 daily doses after sex (referred to as ‘event-based PrEP’). It is available free of charge through sexual health clinics and is recommended for people at higher risk of acquiring HIV.

The trial was intended to assess the costs associated with providing PrEP through specialist sexual health services (SHSs) and to determine the:

• population’s need for PrEP
• length of the need
• rate of PrEP uptake
• duration of use among SHS attendees in England

The trial was conducted in 157 SHS across England between 13 October 2017 and 12 July 2020. As participants in this study were recruited during and after the trial, barriers and facilitators to PrEP uptake varied due to the change in PrEP availability and policy.

PEP is treatment that can stop an HIV infection after the virus has entered a person’s body. HIV PEP is taken within 72 hours after a possible exposure to HIV and it should be used only in emergency situations. It is not meant for regular use by people who may be exposed to HIV frequently. PEP is not intended to replace regular use of other HIV prevention methods, such as consistent and proper use of condoms during sex or PrEP. PrEP is different than PEP, in that people at risk for HIV take a specific HIV medicine daily or an injection every 2 months to prevent getting HIV.

SHARE and LEADS aimed to provide insights into the experiential journey of participants prior to HIV diagnosis including their:

• perceptions, knowledge and beliefs about HIV
• their lived experiences
• the challenges and enablers for their use of HIV prevention interventions
• engagement with services

These findings will be used to identify areas where health service delivery can be strengthened, and health promotion can be tailored to improve HIV prevention uptake among those in need.

Methodology

SHARE included people aged 18 years and over who received care at an HIV clinic in England and showed evidence of recent HIV acquisition. Participants were defined as having evidence of recent HIV acquisition if:

• they had a negative HIV test in the previous 2 years
• a CD4 count of at least 350 cells per cubic millimeter (mm³) of blood within 91 days of diagnosis
• a positive Recent Infection Testing Algorithm (RITA) test
• evolving serology (for example, p24 antigen positive and antibody negative) or evidence of seroconversion illness

LEADS included people aged 18 years or over who were considered to have been diagnosed late if:

• participants had evidence of late-stage infection with a CD4 count below 350 cells per mm³ of blood within 91 days of diagnosis
• no negative HIV test within 2 years of diagnosis
• no other evidence of recent infection

Prospective participants were identified by clinics that were supported by pseudonymised surveillance sampling frame derived from routine returns to the HIV and AIDS Reporting System (HARS). Attempts were made to include people from varying demographic and geographical backgrounds. Interviews took place between April 2021 and July 2022 and were conducted by interviewers with experience of working with patients in HIV and sexual health services and qualitative research. Interviews lasted between 30 and 190 minutes and were recorded.

Interviews explored the following topics on:

• barriers and opportunities for engaging in HIV preventative behaviour such as use of condoms, PrEP and HIV testing
• differences in barriers and opportunities among different population groups (for example, people who identify as gay, bisexual and other men who have sex with men (GBMSM), heterosexual men and heterosexual women) and whether inequalities exist
• views on perceived and experienced gaps in current HIV prevention interventions
• proposed recommendations for improving and strengthening existing HIV prevention interventions

The data was analysed using the COM-B model (Figure 1) which postulates that capability, motivation and opportunity explain the uptake of certain HIV prevention interventions (for example HIV testing, condom use or PrEP).

1. Capability (C) refers to having the knowledge, skills, cognition, and motor skills to engage in a behaviour.

2. Motivation (M) refers to beliefs, attitudes and habits.

3. Opportunity (O) refers to the social influence and physical infrastructure that enable or impede a behaviour (B).

The data was analysed thematically and, for the purpose of this report, simplified and presented as barriers and facilitators to engagement in HIV preventative behaviours. Forthcoming academic publications will provide a detailed account of the methodology used.

Figure 1. The COM-B model

A total of 26 individuals were interviewed in the SHARE participants’ group and 9 in the LEADS participants’ group. Demographic characteristics of participants are presented in Table 1. The majority of participants were men (21 SHARE and 8 LEADS) and a greater number of men were exposed through sex with men versus with women (20 versus 1 SHARE; 4 versus 3 LEADS). Most (21 out of 26) of the SHARE participants were aged between 25 and 49 years, whereas most (5 out of 9) of the LEADS participants were aged between 50 to 64 years.

In this report we present participants’ subjective experiences and anonymised quotes representing the independent thoughts, feelings and experiences of each participant.

Table 1. Number of participants in SHARE and LEADS by demographic characteristics, March 2021 to July 2022

Demographic	SHARE	LEADS
Number of participants approached	76	51
Number of participants consented	44	11
Number of participants interviewed	26	9
Response rate	34%	18%
Gender identity: men	21	8
Gender identity: women	5	1
Exposure group: men exposed through sex between men	20	4
Exposure group: men exposed through sex with women	1	3 (+1 who is also noted under ‘other’ exposure group)
Exposure group: women exposed through sex with men	5	1
Exposure group: other	0	1
Ethnic group: White British	14	4
Ethnic group: White other	4	1
Ethnic group: Black African	4	3
Ethnic group: Black Caribbean	1	0
Ethnic group: Asian	1	1
Ethnic group: mixed	2	0
Aged 18 to 24 years	2	1
Aged 25 to 34 years	10	1
Aged 35 to 49 years	11	2
Aged 50 to 64 years	3	5
Aged 65 years and over	0	0

Sources: SHARE and LEADS studies.

Insights from SHARE

Barriers and facilitators to engaging in HIV prevention interventions

A full list of themes describing all barriers and facilitators highlighted in the SHARE study by participants are presented in Appendix 1 and Appendix 2. Below are highlights from the most commonly mentioned themes.

Barriers to HIV prevention

Barriers to condom use and PrEP were assessed separately in the SHARE study (and specific section on PrEP is presented below). However, there were some overall common or overarching themes which are summarised below.

Awareness and knowledge about HIV

Knowledge about HIV, HIV risk and HIV prevention varied amongst participants with some apparent gaps. Participants described HIV as being something that people die from if they get it, something that they knew was prevalent in Africa, and something that had not crossed their mind. Other participants mentioned having some knowledge of HIV but described it as ‘very limited’. Several participants believed that there was no HIV in areas where they lived and described out-dated knowledge.

An Asian heterosexual man, aged 35 to 49 years, said:

[I] just knew that in the 80s and 90s, it killed a lot of people in Africa, that was it and when you got it, you’re dead.

Visibility of HIV prevention campaigns

Participants felt that there was a lack of HIV prevention campaigns both within healthcare settings and elsewhere in public spaces which people would come across in everyday life. Participants highlighted missed opportunities to gain knowledge about HIV risk and prevention options in sexual health clinics, educational settings, general practice, and on online platforms for HIV self-testing. An absence of HIV prevention and testing promotion alongside other healthcare interventions was highlighted, particularly contraception.

A Black African heterosexual woman, aged 25 to 34 years, said:

I like the way they advertise the ‘morning after pill’ about getting pregnant, they don’t advertise the PrEP and the PEP like that […] I would’ve liked to be told, you know, about that, the same way they go on and on and on and on about birth control, they should also go on and on about this is also important.

A White British GBMSM, aged 50 to 64 years, said:

[…] when I was younger, growing up, we had posters, we see leaflets, we see a lot on TV, and I’ve noticed when I’ve obviously got older and older and older. I never hear much about HIV.

Low risk perception

The lack of knowledge resulting from low visibility of HIV prevention campaigns and the absence of conversations in health care settings and through social networks contributed to low self-relevance for HIV, evident predominantly in perceiving to be at low risk.

Participants compared their risk of HIV to that of other sexually transmitted infections (STIs) such as chlamydia and gonorrhoea. More was known regarding the prevalence, diagnosis and treatment of STIs and they were correctly perceived as more common than HIV. This perception led to the risk of HIV being minimised or not considered.

HIV risk was commonly associated with the types of sex people engaged in where some felt that the risk was mitigated by only having certain types of sex with certain people. 

For some participants, HIV was perceived as no longer a significant public health issue given the current treatment and prevention options available.

A White British GBMSM, aged 25 to 34 years, said:

I feel like in my mind HIV, I just think of like the 80s and 90s, so no, I didn’t really think of there being any form of massive HIV thing today, well I didn’t at the time, I didn’t think that that was a huge issue.

Relationship dynamics

A common reason for not considering HIV prevention was the nature of interactions with sexual partners. For some women, internalised patriarchal values presented as barriers where the decision to use prevention was considered to be the ‘man’s decision’, thereby demonstrating lack of agency and power.

A Black African heterosexual woman, aged 35 to 49 years, said:

[…] it’s the man’s call basically. It’s the man’s call. And there was also the general feeling that went was, well, that’s what the men say. Once they wear a condom, it takes away their joy. You know, they say they like flesh to flesh. […] I think part of that is that my culture orientation perhaps seemed to have overshadowed my sense of responsibility to my health. I mean, because culturally there were certain things that are no-gos. And one of them is sexual health.

At times when condom use had been discussed between partners, the feedback was that those conversations would often lead to some partners feeling insulted by ‘a lack of trust or infidelity’. Some people evaluated trust and risk of a partner having HIV and the consequent decision to use condoms based on personal characteristics such as being a friendly person, or the type of job partners had.

A White British GBMSM, aged 50 to 64 years, said:

I looked at it in some respect to what they did as a job, you know. If somebody had a stable job for a long time then that was more a safer person than somebody that had many, many jobs over the years and worked in a bar type thing, you know. But that was my view on it.

Some participants described instances where they tested for HIV and subsequently stopped using condoms and where, when they trusted their partners, they felt they could skip this testing step.

Trust also prevented people from accessing PEP in occurrences where HIV risk was considered after a sexual encounter, due to reassurance from the partners that there was no need.

A Black African GBMSM, aged 25 to 34 years, said:

I took [my sexual partner’s] word for it, you know. So, after the whole thing, he suggested ‘Ok, fine, should we go to the hospital?’, and I said ‘Hmm, are you clean?’, and he said ‘Yeah, yeah, yeah, yeah, yeah. Yes, I am’, and I was like ‘Oh yeah if you are, then no problem’. So, I think what happened to me was a result of I trusted a person. I didn’t go forward to actually take care of myself. Because when the suggestion at the time to go to the hospital was given to me, I would have gone, it would have been within the 72-hour window [inaudible], but I trusted blindly.

Impact of poor mental health

Poor mental health was commonly identified as a reason for a lack of consideration of HIV risk and HIV prevention methods. Some people, due to emotional and social problems affecting their overall mental wellbeing, just felt that they ‘didn’t care anymore’. Even when social support was available, some people were simply not able to engage in it.

Poor mental health was often perceived as a driver for increased risk behaviours and, in some cases, associated with substance use that led to individuals putting themselves in vulnerable situations.

A White British GBMSM, aged 35 to 49 years, said:

[…] I think I was a lost cause really; I think they [healthcare providers] did, they did pretty much everything they could to help me. I mean, I can remember one occasion it was literally like ‘What are you doing? This is not going to end well, you’re throwing your life away’. Um, and yeah, I mean, that was that, yeah, um genuine, some kind of human kind of get a real sense of compassion and I was touched by it, you know? Yeah, I am afraid it was a waste of their time unfortunately, but it was there. […] Yeah, I think that I engaged with some of the help and support, you know, but I think drifted further out and I think I felt a bit beyond it really.

Experience of stigma

Stigma was apparent in participants accounts at various stages of the HIV pathway. For some, this was at the stage of assessing personal risk where stereotypical and stigmatising views on who was at risk of HIV led to the tendency for participants to distance themselves from that population resulting in a minimised perception of the risk.

Anticipated stigma was also mentioned as a barrier to accessing healthcare and sexual health services with participants not wanting to be seen attending such venues or to discuss their need for an HIV test with healthcare workers.

Some participants who attended their appointments described stigma enacted by healthcare staff towards sexual practices (that is the types of sex people reported to have), sexual orientation, sex work and partner numbers. Healthcare staff sometimes ascertained participants’ sexual risk as not being sufficiently high for eligibility to access PrEP, despite their expressed needs and noting that they then went on to acquire HIV.

A GBMSM of White other ethnic background, aged 35 to 44 years, said:

I think the clinicians, they always do thinking about guys or people which they are in more risk than I was at that time. So, I felt like ‘OK, I’m not going to bother because probably I won’t get it anyway’.

Facilitators to HIV Prevention

Knowledge about HIV prevention

Participants explicitly mentioned their awareness of condoms as an HIV prevention method indicating that knowledge played some facilitating role. One person, GBMSM of White other ethnic background, aged 25 to 34 years, emphasized:

The only one time I have, I had unprotected, unprotected sex, that was ages ago. Like eight years ago. […] But I knew what the risk involved shortly after because I become older and more knowledgeable, and I didn’t do it again.

However, some participants described occasions where they did not use a condom, demonstrating that knowledge alone was insufficient.

A Black African heterosexual woman, aged 35 to 49 years, said:

I’m a classic case because as much as I have the knowledge, as much as I have access to information, I wasn’t as careful as I should have been.

Trust in relationships and moral values

Whilst trusting a sexual partner seemed to undermine condom use, among some participants a lack of trust was conversely a motivator to use a condom.

A GBMSM of mixed ethnic background, aged 25 to 34 years, said:

If it was a new person, I always say the first time we’re protected.

A couple of participants reported that it was morally necessary to use condoms. This was illustrated by one man, who emphasised that he felt morally obliged to use condoms when engaging in higher-risk activities like chem-sex parties.

The White British GBMSM, aged 35 to 49 years, said:

[…] I made sure that I had [condoms] with me, whereas [peers] just obviously didn’t really mind, you know, didn’t matter about condoms and things because they just didn’t care. So, it was kind of, I suppose, it was morality, I think it made me […] I think that you can do these things, but you can do them more safely at least.

Barriers to accessing PrEP

Lack of knowledge about PrEP

The main barrier to engagement with PrEP, including event-based PrEP, was a lack of sufficient knowledge and not knowing how to access it. PrEP and PEP were sometimes referred to interchangeably, indicating a lack of awareness about their differences and appropriate usage.

A GBMSM of mixed ethnic background, aged 15 to 24 years, said:

So, I knew of, I know people some people were on [PrEP], but I wouldn’t have had a clue how to get it. You know, how it starts, how, you know. […] Whether [PrEP is] NHS, whether I would have been old enough to have it. I wouldn’t. I don’t know.

Missed opportunities in healthcare settings

One of the main barriers to the uptake of PrEP highlighted by most participants were missed opportunities in health care settings (sexual health services and primary care) to talk and learn about PrEP coupled with not having PrEP need identified:

A GBMSM of White other ethnic background, aged 35 to 44 years, said:

I would have liked somebody to say, hey, you know, PrEP works and if you ever have, even if it’s just one on an occasional basis, have unprotected sex, please really think about taking it. This is information and this is how it works and so on.

One participant could not fully understand PrEP and PEP due to information not being provided or available in other languages. The GBMSM of White other ethnic background, aged 25 to 34 years, said:

But for me was like, I, I didn’t know very good English. […] I remember when they were telling me that was PrEP, one per day, I remember did have something like a consequence. […] And the second thing they told me [if you have sex?] you get PEP after. When they explained the PEP, I thought this is very difficult to understand, how to use PEP.

PrEP side-effects

Another influential barrier was perceiving PrEP as medication with side-effects. One participant’s (White British GBMSM, aged 25 to 34 years) concerns were about PrEP’s novelty and complexity. Two participants preferred alternative medicine approaches which seemed to stop them from taking PrEP.

A White British GBMSM, aged 50 to 64 years, said:

And I just, it, just my personality how I was brought up, my parents are very, you know, holistic, you know, homeopathy believers, you know, we always [say?] ‘You don’t take drugs if you don’t need to. Take it if you need to’. [inaudible] And so I’ve always been. I’m not I wasn’t on medication for anything, so relatively healthy. So, I didn’t want to take a daily pill to have sex with people I already know and that require me to go to a three-monthly liver function test and there could be some toxicology issues down the line, you know, that you wouldn’t know about. It just didn’t, I just didn’t think it was necessary.

The above participant is referring to the fact that most people taking PrEP will be offered regular kidney function tests.

Preference for PEP was also highlighted as an easier option compared to PrEP due to potential for side effects, although this quote also highlighted lack of knowledge about event-based PrEP.

A White British GBMSM, aged 50 to 64 years, said:

[PEP] is a better one, because if you have sex, you can take the pill, like the ‘morning after pill’ if you want to, and you’re not constantly taking a pill every day for it to kick in. I can tell you it depends if you’ve had sex and you don’t get it, you know, and I think that’s probably better.

The concern about side effects seemed to reflect an interaction with other target behaviours (for example, using or considering condoms). Some participants explained that the prospect of side effects from PrEP was influencing their decision to continue using condoms.

Low risk perception

Another main barrier to accessing PrEP was low self-relevance for HIV prevention generally and specifically low self-relevance for PrEP as a result of low risk perception. In some cases this was because of assumptions about who PrEP is for and in other cases it was about low-prioritisation of the need for PrEP:

A White British GBMSM, aged 35 to 49 years, said:

Yeah and also because you think the risks, you know, you know, naively think, you’re taking a low risk so you’re not so worried, you’re not thinking, you know that I’ve got to check this [PrEP or PEP] out.

Facilitators to PrEP use

The analysis of facilitators was mostly hypothetical since most participants had not taken PrEP, leading us to hypothesise the uptake and consideration of taking PrEP. PrEP facilitators were in most instances the inverse of the barriers identified, for example, learning about PrEP from others or wanting to stay safe and take control.

Learning about PrEP from others

Some participants highlighted benefits of learning about PrEP through others or through media outlets such as social media, TV or leaflets. However, only one participant (White British GBMSM, aged 25 to 34 years) had used PrEP. This may demonstrate that knowledge in itself does not automatically translate into action.

The White British GBMSM, aged 25 to 34 years, said:

And so, I did know about PrEP and PEP. […] Yeah. So, I did know about those. And you talk about, I talked about it with my friend.

Wanting to stay safe and take control

A motivation for taking PrEP was wanting to mitigate any risk for HIV.

A GBMSM of White other ethnic background, aged 25 to 34 years, said:

I find out that one of the men I’ve been seeing at the time, he lied to me, so he’d been positive but he never mentioned that, but he was undetectable [note 1]. Yeah. Like it’s there’s no it doesn’t make any difference, it was just lie so people like lying, so I thought, okay, he was undetectable another one might be not and so on so it’s better to do something about it.

Note 1: Undetectable = untransmittable (U=U) is the scientifically sound concept, based on clinical evidence, that if someone has an undetectable viral load, they cannot sexually transmit HIV to others. This concept is firmly established and recognised by health groups and organisations worldwide including the World Health Organization (WHO).

Insights from LEADS

Barriers and facilitators to HIV testing uptake

A full list of themes describing all barriers and facilitators highlighted in LEADS study by participants are presented in Appendix 3. Below are highlights from the most common themes from 9 participants.

Barriers to HIV testing

Limited HIV knowledge and understanding of the healthcare system in England

Some participants highlighted lack of awareness about where to go for an HIV test in the UK, thereby undermining their chances of taking an HIV test.

A Black African heterosexual man, aged 25 to 34 years, said:

[Interviewer: Did you know about sexual health clinics, for example, did you know that they’re free for everybody and they are anonymous […]?] No, I have heard about in [country of birth] sexual health [Interviewer: But in the UK, you wouldn’t have necessarily known that, what was the best place to go for an HIV test or anything like that?] No.

Campaign messaging

Some participants highlighted that campaign and public health messaging may be targeted too narrowly, for example, displayed in GP practices where you only go if you are unwell or in ‘gay literature’.

A White British heterosexual man, aged 50 to 64 years, said:

You know, if you made a poster and you put it in all of the GP surgeries, for example, you have to go to a GP surgery to see it […] So if you’re not unwell, you’re never going to see that.

Missed opportunity to be offered an HIV test in a healthcare setting

The majority of participants explained that they weren’t offered an HIV test in situations where they were either treated for something in a health care setting already (kidney failure, COVID-19) or were entering the health care system. The latter was the most common account and typically referred to registering with a new GP.

A Black African heterosexual man, aged 25 to 34 years, said:

It probably would have helped [to be offered an HIV test when registering with my GP] with me not getting as ill as I was, but I was never offered any HIV or whatever […] I am someone who was raised so when something is offered to you, you accept not with one hand but with both hands.

The missed opportunity to get tested for HIV as part of routine registration for example in GP, may have played a critical part in participants’ evaluations of their overall health. In addition to diagnoses missed through lack of screening opportunities, some participants reported that their GPs missed opportunities to offer HIV testing after presenting with indicator symptoms, suggesting lack of knowledge on behalf of the GP.

A White British GBMSM, aged 35 to 49 years, said:

I went to the GP surgery and had an X-ray, and they diagnosed a completely different lung disorder.

Anticipated stigma undermines HIV testing

Participants explained that they perceived previous interactions with sexual health professionals stigmatising preventing further help-seeking behaviour.

A GBMSM of White other ethnic background, aged 35 to 49 years, said:

Like I remember the first time I went to the sexual health clinic and I don’t know whether I was in [city 1] or [city 2], I think was in [city 1], they were asking me all these questions about the partner I had about I was like, Oh my God, I’m not going to say how many I had because this guy’s going to think I’m what kind of person am I ? So, I didn’t tell the truth. So, I said ‘No, just 1 or 2 […] So, my idea was, like, the only one, like I say, it’s too much. This person’s going to say ‘That’s why you got it. That’s why I got this disease. That’s why you catch, you got HIV on all the other sexual transmitted diseases.

Facilitators to HIV testing

Feeling unwell

All participants were tested for HIV at least once at diagnosis. However, most participants were eventually diagnosed with HIV ‘by chance’ after they became severely ill, which triggered an unspecified health care professional to request the HIV test (that is someone else initiated the test). The majority of participants reported that they were tested for HIV as a consequence of poor physical health.

A Black African heterosexual woman, aged 50 to 64 years, said:

I had the corona infection, it was during that time I was going for my tests and a review or something and I was asked to do a blood test because I was coughing and having some rashes on my back. I was in hospital as well for Covid. It was after Covid [after being discharged], I was doing blood tests and having an X-ray and the doctor said I should have HIV test. […] During the 6 months test on lungs and heart, because they were really damaged, the doctor said: ‘Would you mind doing the test?’, and I said ‘I don’t mind doing the test’.

Only one participant sought out an HIV test based on their symptoms. The White British GBMSM, aged 50 to 64 years, said:

I had something wrong with my throat. So it was, there was going on, so I was just weird. So, I went to the doctors. And then I went to do an HIV test and it came back negative in 2019. […] And then throat thing started again. […] Well, basically, it was Candida but I’ve never noticed it before until it’s in the mirror one day […] And so which is when I was diagnosed.

Visible HIV testing campaigns

Although some participants highlighted that campaign and public health messaging may be targeted too narrowly, it was also noted that the campaigns had a positive influence on getting tested.

A GBMSM of White other ethnic background, aged 35 to 49 years, said:

[…] every time I hear on the news of talking about HIV or something similar, I used to feel something like ‘I should test, I should test, I should test’, but then I just let it go. So, every time the word HIV, I felt like how do you say thing in English, a little bit of pressure. […] Like I should do something. I should test actually test.

Discreet HIV testing environments

Participants emphasised that HIV testing in designated facilities, such as sexual health services, can be particularly time consuming and connected to unwanted interpersonal interactions. They explained they would have been more likely to test (and in fact, did do so) in discreet environments such as general clinics (for example non-sexual health clinics). Testing inside or near a hospital can be understood as an environment which provides a multitude of possibilities as to why an individual is there, not just for an HIV test.

A GBMSM of White other ethnic background, aged 35 to 49 years, said:

I didn’t feel [put off from testing] when for example a sexual health clinic is inside a hospital or near a hospital.

The above participant did eventually test at home – another discreet environment. They explained that it was easy to order and do the HIV test at home.

Conclusions

This study interviewed people living with HIV, asking them to identify barriers and facilitators to uptake of HIV prevention interventions.

The barriers to HIV prevention that were identified in this study broadly reaffirm barriers that have been identified and published in previous studies (mostly among people who did not have HIV), focusing on those groups that were at higher risk of acquiring HIV (1 to 5). This demonstrates that there has been little progress in addressing these barriers over the last few decades, in particular to condom use. While PrEP has only been routinely commissioned at sexual health services since 2020, some access and uptake barriers reported in this study confirmed previous and subsequent findings.

Many of the findings relate to issues which are deeply ingrained and seem to be difficult to overcome. Lack of HIV knowledge, awareness and misinformation prevent individuals from being able to accurately assess their personal risk that would result in HIV prevention interventions in a given time. Knowledge, however, did not seem to always lead to preventative action as people still perceived their personal risk to be minimal due to the continuing decline of new HIV diagnoses during the study period and the success of HIV treatment in achieving rapid viral suppression and undetectable viral load. To reduce new HIV transmissions in England, there is a need for more effective strategies that are relevant, targeted and engaging to particular groups such as young people.

Reassurance or trust between sexual partners remains an ongoing theme in HIV and STI prevention. Decisions around trust are often driven by emotion rather than evidence which inhibits an individual’s capacity to proactively inquire about partners’ risk of having HIV. In some cases, conversations with partners led to a false sense of low or no risk. This study identified power imbalance and misguided trust in interpersonal relationships, lack of normalisation of looking after sexual health and wellbeing and not having relevant conversations as main barriers to engaging proactively with HIV prevention and were contributing to ongoing stigma.

Missed opportunities for offering HIV testing and PrEP and lack of recognition of HIV indicator conditions as a prompt to offering HIV testing were other systemic issues identified in the study. As previously documented, there was a significant impact of COVID-19 pandemic on a change in help-seeking behaviour with a big shift from face to face attendances to increased online testing in sexual health services in 2020 and 2021 as well as a disruption to sexual health service delivery during the 2022 mpox clade IIb outbreak.

Low HIV testing self-relevance, informed by a low-risk perception as well as anticipated stigma, undermined participants’ motivation to engage with HIV testing. This study identified that positive interpersonal interactions, discreet testing opportunities, and visible campaigns were facilitators, as was feeling physically unwell, which triggered an HIV test in healthcare settings. All of the LEADS study participants were diagnosed as a result of experiencing severe symptoms of advanced stage HIV. Late diagnoses are associated with poorer outcomes and more opportunities for onward transmission.

In addition, if people do not understand the healthcare system in the UK, it would be harder for them to navigate through it and to access HIV prevention services. This is likely to affect people from some demographic groups more than others, for example, those who have recently migrated into the country, people from minority ethnic groups and those from a lower socio-economic background or otherwise marginalised groups so exacerbating inequalities.

Despite some study limitations (for example, small numbers of participants that impact on representativeness of this sample, gender imbalance, lack of PrEP use in participants, recall bias), these study findings are an important addition to a body of evidence that can influence policy and practice at the local and national level. This study is an important step in moving closer towards the WHO and UK government targets of zero HIV transmissions by 2030, by highlighting crucial barriers to HIV prevention and testing that need to be addressed. These study findings will inform the new HIV Action Plan for 2025 to 2030.

Recommendations

SHARE and LEADS participants were asked to put forward their recommendations for ways to improve the uptake of HIV prevention interventions. Below is a high-level summary of recommendations, coupled with professional views, that will be further refined in the development of the HIV Action Plan for 2025 to 2030.

Individual and community awareness and education

Recommendations for this section are to:

• design and implement workshops that teach effective negotiation skills around the use of condoms and PrEP and empowerment programmes for people to learn to assert their sexual health needs
• develop HIV awareness and testing in local communities informed by local needs, including more HIV health promotion interventions that are accessible to diverse audiences
• educate on preventative measure tailored to individual’s needs

Evidence-based awareness raising interventions

Recommendations for this section are to:

• address misinformation and improve knowledge of HIV prevention strategies with more visible and culturally sensitive HIV prevention campaigns, also addressing stigma and agency
• design evidence-based interventions in a way that they consider influence of substance use on decision making processes for utilising HIV prevention measures such as condoms
• focus on positive messaging (for example, sexual wellbeing and benefits of condoms for preventing STIs, unwanted pregnancies and HIV)
• review effectiveness and inclusiveness of current promotional campaigns and conduct research on how to improve these

Services delivery

Recommendations for this section are to:

• ensure a range of evidence-based HIV prevention interventions are available and accessible in both urban and rural areas, when there is a need identified
• ensure frontline healthcare staff across a range of services (for example, primary care, mental health, sexual health services) are trained on availability and accessibility of HIV prevention interventions
• ‘Making Every Contact Count’ in healthcare settings should include HIV awareness raising and signposting to HIV prevention interventions
• full implementation of BHIVA, British Association for Sexual Health and HIV (BASHH) and British Infection Association (BIA) Adult HIV Testing guidelines 2020 (for example, opt-out testing in sexual health services)
• strengthen integration of mental health and HIV prevention services such as incorporating HIV prevention and sexual wellbeing in treatment programmes

Appendices

Appendix 1. HIV prevention intervention barriers and facilitators identified by participants (n = number of responses): condom use

The barriers to condom use are:

• being ‘in the moment’ (n=2)
• not planning ahead (n=2)
• influence of alcohol and illicit substances (n=6)
• influence from sexual partners (n=6)
• social norms (n=5)
• trusting sexual partners (n=13)
• getting or believing to get tested for HIV (n=8)
• other priorities (n=7)
• believing that there is no HIV ‘here’ (n=6)
• not having acquired HIV ‘so far’ (n=6)
• not ‘sleeping around’ (n=3)
• previous instances of not using condom (n=2)
• using PrEP undermines using condoms (n=2)
• the fear of HIV is not enough to motivate condom use (n=2)

The facilitators to condom use are:

• knowledge that condoms prevent HIV (although on its own not sufficient) (n=4)
• planning ahead (n=1)
• influence from sexual partners (n=4)
• social norms (n=1)
• lack of trust in sexual partners (n=4)
• moral values to use condoms (n=2)
• preferring to use a condom after getting tested (n=1)
• not wanting to acquire or pass on other STIs (n=1)

Appendix 2. HIV prevention intervention barriers and facilitators identified by participants (n): PrEP

The barriers to PrEP use are:

• missed opportunities in health care setting to learn about and discuss PrEP needs (n=12)
• PrEP need not identified by sexual health services (n=2)
• no free or difficult access to PrEP (n=7)
• reassurance by their sexual partners of low or no HIV risk (n=2)
• no or insufficient knowledge about PrEP or how to access it (n=14)
• insufficient language skills to understand what PrEP or PEP is and what it does (n=1)
• low self-relevance for PrEP (n=7)
• PrEP not a priority (n=3)
• perceptions of PrEP and PEP as medication (n=7)
• trusting sexual partners (PEP) (n=2)
• anticipating stigma and logistical problems accessing PrEP and PEP (n=4)

The facilitators to PrEP use are:

• having learnt about PrEP from others and different outlets (n=10)
• associating PrEP with a new chapter in life (n=1)
• previous negative experiences with sexual partners and concerns about lifestyle (n=4)
• being precautious or afraid (n=2)
• perceptions of PrEP and PEP as medication (n=1)

Appendix 3. HIV prevention intervention barriers and facilitators identified by participants (n): HIV testing

The barriers to HIV testing uptake are:

• lack of knowledge about HIV exposure (n=2)
• no knowledge about sexual health clinics in the UK (n=1)
• forgetting to get tested for HIV (n=1)
• missed opportunity to get tested for HIV in health care setting (n=7)
• missed HIV diagnosis on behalf of health care professionals (n=2)
• absence of HIV testing campaign undermines HIV testing (n=2)
• HIV testing is a lot of effort (n=2)
• COVID-19 negatively affects HIV testing (n=2)
• USA immigration law undermined HIV testing (n=1)
• neglecting HIV testing due to false assurance from engaging with health care (n=5)
• not feeling ill leads to trustful passivity (n=5)
• low HIV relevance undermines HIV testing (n=4)
• entering the USA more important than testing for HIV (n=1)
• being in a long-term relationship undermines HIV testing (n=1)
• anticipated stigma undermines HIV testing (n=3)

The facilitators to HIV testing uptake are:

• being concerned about sexual behaviours facilitates HIV testing (n=3)
• change or start of sexual activity facilitates HIV testing (3)
• ‘scary’ HIV testing campaign and experience facilitates HIV testing (n=1)
• taking an HIV test ‘for fun’ (n=1)
• HIV testing as a habit (n=3)
• feeling unwell triggers HIV test in healthcare facilities (n=8)
• presence of HIV testing campaign facilitates HIV testing (n=2)
• testing for HIV because of the influence from other people (n=2)
• discrete environment makes it more likely to test for HIV (n=1)

References

1. Antonini M, Silva IED and others. ‘Barriers to Pre-Exposure Prophylaxis (PrEP) use for HIV: an integrative review’. Revista Brasileira de Enfermagem 2023: volume 26, issue 3, article e20210963

2. Chebet JJ, McMahon SA and others. ‘Motivations for pre-exposure prophylaxis uptake and decline in an HIV-hyperendemic setting: findings from a qualitative implementation study in Lesotho’. AIDS Research and Therapy 2023: volume 20, issue 43

3. Coukan F, Murray KK and others. ‘Barriers and facilitators to HIV Pre-Exposure Prophylaxis (PrEP) in specialist sexual health services in the United Kingdom: a systematic review using the PrEP Care Continuum’. HIV Medicine 2023: volume 24 issue 8, pages 893 to 913

4. Nabunya P, Sensoy Bahar O and others. ‘Bridges-Round 2: a study protocol to examine the longitudinal HIV risk prevention and care continuum outcomes among orphaned youth transitioning to young adulthood’. PLOS One 2023: volume 18, issue 5, article e0284572

5. Muhumuza R, Ssemata AS and others. ‘Exploring Perceived Barriers and Facilitators of PrEP Uptake among Young People in Uganda, Zimbabwe, and South Africa’. Archives of Sexual Behavior 2021: volume 50, issue 4, pages 1,729 to 1,742

Acknowledgements

Thank you to all the participants who shared their experiences with us and to all the sites who helped to recruit participants:

• Barking Community Hospital
• Basingstoke Crown Heights
• Bath Street Health and Wellbeing Centre
• Beckenham Beacon
• Birmingham Queen Elizabeth Hospital
• Royal Bolton Hospital
• Royal Bournemouth Hospital
• Royal Sussex County Hospital
• Southmead Hospital
• Portsmouth Contraception and Sexual Health
• Kent and Canterbury Hospital
• HIV Chester Unit
• Essex Sexual Health Service
• Croydon University Hospital
• Derriford Hospital
• Eastbourne Avenue House Genitourinary Clinic
• Gloucestershire Royal Hospital
• Genitourinary Medicine Clinic Sandwell
• Harlow Clinic
• Hastings Station Plaza Sexual Health
• Herefordshire Sexual Health
• St James’s University Hospital Leeds
• Ashwood Centre St Mary’s Hospital
• Kidderminster Hospital
• King’s Mill Hospital
• Kingston Hospital
• Leicester Royal Infirmary
• Royal Liverpool Hospital
• Croydon University Hospital
• Chelsea and Westminster Dean Street Clinic
• Guy’s and St Thomas’s Hospital
• Homerton Hospital
• Kings College Hospital
• Lewisham Alexis Clinic
• Mortimer Market Centre
• Royal Free London
• St George’s Hospital
• St Mary’s Hospital
• Luton and Dunstable Hospital
• Macclesfield District General Hospital
• Maidstone Hospital
• Manchester Royal Infirmary
• Manchester Withington Hospital
• Manchester Royal Infirmary
• Queen Elizabeth The Queen Mother Hospital Margate
• Milton Keynes General Hospital
• Royal Victoria Infirmary
• One to One Centre Shiremoor
• Nottingham University Hospitals
• Nye Bevan House
• Oldham Sexual Health Service
• Oxford Churchill Hospital
• Rochdale Sexual Health Service
• Rotherham District General Hospital
• Royal Liverpool University Hospital
• Royal Shrewsbury Hospital
• Salford Royal
• Kent Community Health NHS Foundation Trust
• Royal Hallamshire Hospital
• Slough Upton Hospital
• Royal South Hants Hospital
• Stevenage Clinic
• Stockport Choices Centre and Central Youth
• Cobridge Sexual Health Clinic
• Swindon Great Western Hospital
• Telford Bishton Court
• The Garden Clinic Slough
• Torbay Hospital
• Pinderfields General Hospital
• Warrington Hospital
• Sandwell Hospital
• Southend University Hospital
• Withington Clinic
• Wolverhampton New Cross Hospital
• Woolwich Queen Elizabeth Hospital
• Sexual Health Worthing

Thanks to the SHARE and LEADS Steering group who has overseen this work and the following individuals who contributed to this report (in alphabetical order):

Adamma Aghaizu, Alison Brown, Amber Newbigging-Lister, Amina Addow, Ammi Shah, Carina Hoerst, Carole Kelly, Clare Humphreys, Cuong Chau, Debbie Mou, Dolores Mullen, Hamish Mohammed, Hannah Kitt, Helen Corkin, Hena Haque, Iain Reeves, Joan Ekajeh, John Saunders, Kathy Lowndes, Kedeen Okumu-Camerra, Neil Mackay, Nicky Connor, Sema Mandal, Shaun Bera, Sonia Rafeeq, Tamara Đuretić, Temitope Omisore, Veronique Martin, Vicky Gilbert, Vicky Schoemig, Will Nutland.

Suggested citation

Carina Hörst, Hannah Kitt, Helen Corkin, Dolores Mullen, Ammi Shah, Adamma Aghaizu, Clare Humphreys,Tamara Đuretić: HIV prevention barriers and facilitators: findings from qualitative interviews among people diagnosed with HIV.