Providing accurate information doesn't always reduce people's anxieties about HIV

HIV was a prominent cause of anxiety among people using an online sexual health service, Canadian researchers report. The provision of accurate information didn’t always correct people’s perception of risk or feelings of anxiety.

The analysis of anonymous chat conversations from a sexual health website shows how different forms of shame and stigma appeared to shape users’ perceptions of risk. It highlights how nurses working on the website used strategies including empathising, normalising and destigmatising sexual health experiences. 

Common anxiety disorders like generalised anxiety, panic disorder and post-traumatic stress disorder are associated with greater health service use. People with health anxiety (which is categorised as an obsessive-compulsive disorder) are often preoccupied with the idea that they are experiencing ill health. They may access services or seek information to get reassurance and reduce distress.

Anxiety disorders are common among sexual health service users and may be shaped by symptoms, testing or partner notification and by experiences of stigma with service providers. Online services like chat tools staffed by sexual health nurses serve as an important source of sexual health information. As they are anonymous and easy to access, they may be especially useful for people who have experienced sex-related stigma and marginalisation.

The researchers analysed 25 unique transcripts of chats from the Canadian sexual health website SmartSexResource.com, which included in-depth discussions that included the keywords ‘worr*’ (worry, worries, etc) and ‘anx*’ (anxiety, anxious, etc). Researchers used inductive thematic analysis to identify themes and patterns of chat users’ feelings and behaviours, as well as their interaction with chat nurses.  Due to the anonymous nature of the chat function, the study can’t provide demographic information about the chat users.

Findings

These chat users were mainly worried about HIV transmission following recent sexual contact, HIV symptoms and the accuracy of HIV tests. Less commonly, chat users expressed anxiety about acquiring sexually transmitted infections (STIs) or unintended pregnancy. This was usually not the first time the chat users had access sexual health services – gaining new information was not their primary motivation for their chat visit. Many were seeking reassurance around their feelings and emotions.

Most of the time, users were highly concerned with experiences that carried little or no risk, and with hypothetical exposure scenarios. However, whilst some chat users used the information provided by nurses to prepare their next steps or take action, others with persistent anxiety struggled to accept the information provided and ruminated in repetitive patterns of questioning.   

Chat nurse: "The test you took is over 99% accurate, so you can be confident that you don’t have HIV."

Chat user: "But ever since I’ve had symptoms that worry me. Could my test results be wrong?"

Sex with a sex worker (or sex outside an existing relationship), was perceived as carrying a high risk of HIV or STI transmission, possibly reflecting chat users’ underlying beliefs and assumptions about sex workers. It was often described as a “stupid mistake”. Chat users felt they had put themselves or other partners at risk, which was often a source of self-blame and isolation.

Chat user: "I know this sounds so stupid, but I had sex with a sex worker... I had HIV tests at 6, 9, 14 weeks and they were all negative but I can’t stop thinking about the possibility of HIV."

Chat nurse: "A negative HIV test at 14 weeks would be accurate. Were you tested for other STIs as well? For example chlamydia or gonorrhoea? These are much more common."

Chat user: "I can’t believe I made such a stupid mistake."

For some, HIV was perceived as the worst imagined outcome of a sexual experience, regardless of the risk levels of their sexual experience. It was often described as the “biggest fear”, remaining the focus of the conversation with little regard for more common STIs. Stigmatised sexual behaviours and relationships were perceived as risky transgressions that were associated with vulnerability to HIV, and personal feelings of discomfort, shame and guilt.

Chat nurse: "HPV/HSV risk is no greater if you have sex with a sex worker vs sex with anyone else."

Chat user: "No, I don’t believe that."

"Chat nurses need to extend their conversations by providing more mental health resources and referral options."

In many cases, nurses effectively initiated conversations with chat users about their feelings of anxiety and sought to destigmatise and normalise sexual experiences and concerns. They also used ‘interrupting strategies’ to shift the conversation from clinical concerns to discussing feelings, emotions and mental health. They acknowledged and validated chat users’ feelings and concerns, and encouraged them to seek support and self-manage anxiety, for example through exercise and meditation.

Chat nurse: "When we have new sexual experiences we can have different emotions afterwards. It doesn’t always mean you were at risk, it just feels different because it’s new partner or kind of sex."

Chat nurse: "The symptoms you’re describing aren’t symptoms of HIV. Sometimes when we’re really stressed or worried we can experience all sorts of symptoms. Have you talked to anyone about your worry?"

However, few mental health-related referrals were provided. In some instances, nurses responded to chat users’ expressions of anxiety by offering factual information or assessing chat users’ risk levels in multiple scenarios. Sometimes nurses suggested HIV testing for “peace of mind”, even when it was clinically unnecessary. These strategies did not appear to lessen chat users’ feelings of anxiety.

Conclusion

These online services can provide increased privacy, autonomy and convenience, but they can paradoxically increase distress and anxiety in some individuals who are seeking reassurance.  The repetitive use of the chat by some was counterproductive and reinforced their preoccupation with illness. For others, their intolerance of uncertainty – typical of anxiety – meant ambiguity between their experience and the information provided was perceived as a risk or a threat. The provision of accurate information didn’t correct the perception of risk or feelings of anxiety.

The findings of this study demonstrate that sexual health-related anxiety, particularly around HIV, is a source of pronounced distress among some online sexual health chat users. It highlights the need for targeted interventions addressing sex-related stigma and anxiety.

The researchers say nurses need to extend their conversations by providing more mental health resources and referral options, and suggest improved guidance on mental health screening in online sexual health services. There is a need for sexual health services to provide resources that help people understand and manage their sexual health anxiety, and to connect them with appropriate mental health support services.