Barriers to engagement with testing for sexually transmitted infections within a UK-based young adult Black Caribbean community: a qualitative study

Perceived as ‘dirty’ by young people, STIs were stigmatised by religious conceptions of ‘purity’ and shame. By association, this stigma extended to STI testing as an indicator of purity, with female participants describing a fear of being negatively characterised as ‘unpure’ (YA13, YA16) based on their need to carry out an STI test. Such purity myths and associated feelings of shame impacted these women’s decision-making with regards STI testing, instead choosing not to test to avoid stigmatisation by themselves and others.

YA13: it kind of makes me feel like almost dirty and like unpure in a way… I don’t like the idea of like being tested or anyone know that I have to, have to like test myself in case I’m like, I don’t know, nasty, like I don’t know, that’s how I think of it in my head, that it’s like kind of disgusting… it’s a bit more embarrassing. (Female, age 19 years, interview)

When invited to elaborate on the religious origins of impurity, focus group participants highlighted a spiritual belief system prevalent within the Black Caribbean community relating to ‘soul ties‘ or ‘invisible chains’ that tie people together when they have sex. Beliefs about multiple partners being bad for the soul again instigated feelings of shame within the young women who did have multiple sexual partners. STIs and STI testing behaviour was therefore perceived as a negative karmic consequence of ‘shameful’ sexual behaviour.

Stigma was recognised by health professionals who acknowledged embarrassment attached to attending STI clinics which can ‘put off a lot of people’ as they are very ‘public’ places (HCP6). However, there was less indication from professionals that they understood the deep-rooted cultural nuances of this stigma, over and above general stigma related to STI clinic attendance.

YA16: having multiple soul ties is not good for you spiritually because your soul is no longer your soul, it’s a mixture of your soul and other people’s soul that you’ve had sex with. So not only does it make you unpure, you’re developing an STI from having multiple sexual partners, makes you dirty. (Female, age 19 years, focus group)

Throughout young people’s accounts, there appeared to be a disconnect between the conservative values of abstinence and the sexual liberation of a younger generation. For many, religious teachings prohibiting sex before marriage were viewed as strict; ‘black mums can be quite tough’ (HCP5) or outdated and misaligned with how young people viewed their own rights. Nevertheless, navigating or challenging these intergenerational beliefs was described as difficult by young people, preferring instead to conceal their sexual behaviour or engage in ‘less risky’ behaviours (e.g. non-penetrative sex) than face judgement by family and community members.

Female participants further discussed differences in gender norms within the Black Caribbean community. Specifically, this related to double standards in what was regarded as acceptable sexual behaviour by males and females, for example, number of sexual partners or concurrent partners. Participants highlighted that while women were often labelled as ‘dirty’ (YA17) for having multiple sexual partners, men with multiple sexual partners were praised. Rather than being conceived as a responsible act, STI testing was then, again considered an indication of being ‘dirty’ particularly for women.

YA17: it was very much like ‘oh have you taken an STI test?’ And when he asked me, I didn’t get offended because obviously that’s a valid question but for him when I asked him, he kind of got defensive and was like ‘oh do you think I’m dirty?’ …it was kind of an awkward conversation… because it is a very taboo subject. (Female, age 21 years, focus group)

Peer support facilitated engagement with STI testing, with those participants who felt able to openly discuss their sexual health with others, more likely to engage with STI testing than those who did not talk about these issues. This was supported by health professionals’ experiences. However, many young people reported not feeling able to discuss sexual health with peers or family, seeing it as a forbidden subject.

YA8: I could never mention anything like that, even to cousins, siblings, parents, I couldn’t mention anything like that, or aunties, because there is that taboo around that. (Female, age 24 years, interview)

Further barriers to STI testing related to help-seeking behaviour more generally. Specifically, these beliefs centred on the collective view that Black Caribbeans ‘do not ask for help’, perhaps, as one participant suggested, because ‘we feel silenced’ (YA13) or perhaps related to perceptions of medical suspicion and mistrust (see theme 2). Such beliefs often led to preferences for, and normalisation of, self-care and home remedies over medical tests and treatment.

YA9: I feel like the way we’re raised, we’re raised to like deal with everything, like not with any doctors or anything, like it’s just dealt with, ‘oh, yeah, it will go away or pass by. Like you’ll be fine,’ kind of thing. But sometimes you might actually need their help. Especially with like, the way I grew up, whenever I was sick or had something wrong with me, my mum would most likely just treat it and it did end up going away. (Female, age 19 years, interview)

Legacies of colonialism, medical racism and malpractice, that were deep-rooted and passed down through generations, compromised young people’s trust in medical intervention and confidentiality of their information. To protect themselves, young adults often disengaged from services perceived as presenting a risk to their health (medicalised testing and treatment) or a risk to their personal data being shared without consent.

YA5: If historically there is a history of black people being harmed medically and being used medically, then, you know, the new generation are going to hear about it and think that something’s going on again, because we tend to believe in history repeating itself and we hold that, we hold that like, I don’t know it’s a bit, it’s a bit personal for us you know, you’re told by your family members and it’s that information that’s relayed from one generation to another. (Female, age 21 years, interview)

YA18: In my family, there’s a lot of, don’t give your DNA or data out to anyone because you don’t know what they could do with it. So, I think conspiracy theories, generation, going through generations, I think that’s a factor into why they wouldn’t want to get tested. (Female, age 19 years, focus group)

Mistrust in the health professions was also understood as part of a wider cultural mistrust of authorities. Young people spoke of ensuring the clinic or test is ‘actually safe’ and ‘ethics’ are being followed. As discussed by YA13, not sharing data was inherited as a strategy to avoid discrimination and abuse of power. Use of the collective in describing such views (e.g. ‘we... black people…’) suggested a strong sense of community identity, as a collective against ‘authoritative’ figures.

YA13: Black people, I think as well we kind of feel we are hard to trust, like I wouldn’t, just like I wouldn’t call the police if I had an issue, like first I’d probably call my family or friends and then the police, maybe like the same as if I had an issue with my body I wouldn’t really want to go to the GP just because I think Black people like their own business to themself and we don’t really like asking for help, especially from like people of authority because then that is like its own issue, like they can become very racist when they have authority and we feel silenced but, I don’t know, yeah, health is a bit like different but it is kind of similar, like I would relate it just as much to like the police, like how much we trust them, we just don’t trust people in our business. (Female, age 19 years, interview)

Heath professionals acknowledged the issue of mistrust within the community, suggesting they took time to explain and demystify procedures, for example, reinforcing confidentiality and equality in treatment of service-users. However, HCPs placed more emphasis on fears related to breach of anonymity and confidentiality, particularly for STI home-testing kits where there were risks of partners or friends intercepting kits/results and behaviours being disclosed to family or friends. While this was a concern for young adults, mistrust extended beyond fear of personal information being shared with partners and families, to fears about ‘history repeating itself’ (YA5) in terms of the misuse of medical intervention.

For many of the young adults, limited knowledge regarding STI symptoms and treatments, including how to access STI tests, presented a barrier to STI testing. As such, young people suggested they would rather wait and respond to a discomforting symptom, than engage with proactive STI testing. STI testing was therefore viewed as an option of last resort. Although personal responsibility for increasing knowledge about STIs and testing was acknowledged, approximately half of the young adults expressed a need for improved sexual health education at school or college, as well as via public health campaigns. The need for education was particularly identified in relation to the process of STI testing; i.e. the how as well as the why.

YA12: I’m not really educated much on STI testing which probably may seem like a downfall and I feel like in that case for like probably other individuals who relate with a lack of knowledge like myself, you would wait till like the final call or till you feel like a symptom to actually build up the courage to actually go, find an establishment and go in there. (Female, age 19 years, interview)

Health professionals supported a need for education, as well as identifying a need to correct misinformation, which was recognised as being inherited from peers or older generations; many describing encounters in clinical practice where misinformation had led to delays in testing and treatment.

HCP1: So ultimately, I just think it’s like a generational issue and it has to be this generation of youth that get the information, otherwise it’s going to end up being the exact same issue for the youth’s children, when they have them, they’re just going to be none the wiser again. So, it’s, yeah, it really needs to be, like I really, really wish that schools and education settings did more about it and made it less of like a laughing matter as well, made it quite serious for people to understand like the ramifications of not getting treated, of getting an STI and leaving it and the health issues it can cause. (Health Advisor, interview)

Participants explored potential outlets for a campaign to support engagement with STI testing within the young Black Caribbean population. Specifically, participants identified use of podcasts, culturally targeted radio stations and social media. TikTok, which compiles short videos for users to watch, was frequently highlighted by young people as their preferred social media platform. Young people raised the importance of ‘capturing the person’s attention within the first milliseconds’ (YA10).

YA12: I’m like an active individual on social media, especially like TikTok. I would say using such a platform to actually help educate people. (Female, age 19 years, interview)

YA6: TikTok is very influential on like our age group at the moment, like everyone’s on it, you spend hours on it and as you scroll you come across ads and a lot of the times the ads will catch your attention. (Female, age 20 years, interview)

Content of the proposed STI testing campaign was strongly recommended to include representation from Black Caribbean communities, with emphasis on discretion and confidentiality of STI-testing; and guidance on how to access and perform tests. Somebody who ‘looks like me’ (YA3, YA6, YA7) was a common thread regarding social media content, however it was stressed that this needed to be presented in a balanced way, so as not to ‘single out’ the Black Caribbean community as problematic.

YA6: Especially if you know, they contain people that look like me so if there’s anyone black I kind of think, oh what’s this about, like oh, what are they talking about, so I think that would be a great very effective way to actually portray the message of testing and the importance of it. (Female, age 20 years, interview)

Other approaches to increasing awareness and knowledge of STI testing included integrating sexual healthcare education into established community structures, for example, by reaching out to community leaders in faith-based settings (churches and Sunday schools) as well as locations such as hairdressers and barbers or Caribbean shops.