Stigma, support, and messaging for people recently diagnosed with HIV: a qualitative study

Introduction

Australia has seen a significant reduction in new HIV diagnoses over the past 10 years. Diagnoses among gay and bisexual men decreased by 52% between 2012 and 2021.¹ Biomedical prevention, including HIV pre-exposure prophylaxis (PrEP) and treatment as prevention (TasP), have driven this decrease in new HIV diagnoses.^2,3 Despite fewer HIV diagnoses and better treatment options, it is vital to continue to understand the experiences of being diagnosed with HIV, to ensure that service delivery meets the needs of people with HIV (PWHIV).

Engaging people diagnosed with HIV to commence and sustain taking antiretroviral therapy, also known as TasP,^2,4,5 is beneficial for personal health, and reduces onward HIV transmission. Studies on HIV transmission in the context of treatment have led to international consensus that a person with an undetectable viral load cannot transmit HIV to sexual partners.^6–8 The Prevention Access Campaign⁹ developed the term ‘Undetectable equals Untransmittable’ (U=U), which led to an awareness-raising campaign, launched in 2016, to promote the wellbeing of PWHIV and reduce sexual stigma and discrimination.^10–12 In 2018, the Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM) released guidance to clinicians to promote conversations with patients about U=U.¹³ While U=U has supported many couples with mixed HIV status to experience a relationship not threatened or disrupted by HIV, experiences or anticipation of stigma remain a challenge.^14–16 The ‘NSW HIV strategy 2021–2025’ has set a target of a 75% reduction in reported experience of stigma or discrimination by people living with HIV in NSW healthcare settings.¹⁷

Qualitative studies in Australia have found that people recently diagnosed react to diagnosis with a mix of reactions: some felt calm, but most reported feeling shocked, numb, and distressed, with reactions often linked to stigmatising attitudes towards HIV.^14,18,19 These studies have identified that the provision of up-to-date HIV information and resources, counselling, and support opportunities at the time of diagnosis and in the months following, and services to meet other PWHIV are important in facilitating adjustment to living with HIV.

It is important to note that the changing epidemiology of people being diagnosed with HIV in Australia means that people who are diagnosed in the current era may have different needs. In 2022, 167 NSW residents were notified to NSW Health with a newly diagnosed HIV infection, 33% less than the 2017–2021 average of 251.²⁰ Ninety of the 167 (54%) new diagnoses were in people born overseas. Recent diagnoses have been concentrated among gay, bisexual, and other men who have sex with men born in central or south-east Asia, or the Americas and those who might be less community connected, thus have had less access to information about TasP and U=U prior to diagnosis.²⁰ The reasons for the increase in the proportion of HIV diagnoses among individuals arriving from Asia and the Americas are varied and complex.^21,22 Changing migration patterns, lack of knowledge of free sexual health care and difficulty accessing PrEP may be contributing. Some individuals may have been subjected to repressive sexual social norms potentially affecting their comfort in accessing gay-friendly services.^23,24 Awareness of the changing epidemiology of HIV in Australia is vital to understand the needs of those at risk of acquiring HIV.

In the context of changing HIV epidemiology in the era of U=U, this study aimed to investigate the experiences of PWHIV who were recently diagnosed at RPA Sexual Health, a sexual health clinic in the inner west of Sydney, Australia. As part of a quality improvement project, we sought to understand their experience of receiving their diagnosis of HIV, how their lives have been impacted by the diagnosis, and how initial and ongoing services at the clinic could better support their holistic health.

Materials and methods

RPA Sexual Health has a catchment that includes 5 of the 10 suburbs in Australia where the highest proportion gay male couples live.²⁵ As a publicly funded sexual health centre, the service is free to all people regardless of visa status or citizenship. The clinic provides routine HIV and sexual health testing and treatment, HIV care and counselling services. The service provides ongoing HIV care to approximately 400 PWHIV.

Individuals who tested positive for HIV at RPA Sexual Health between 2016 and 2021, or who were immediately referred to RPA Sexual Health on receipt of their HIV diagnosis elsewhere, were eligible to participate. An online survey was offered to eligible participants via email and telephone. Respondents were asked if they would consent to being contacted for a follow-up interview about their experiences. Qualitative semi-structured interviews were conducted by a member of RPA Sexual Health staff who was not employed at the clinic during the period that individuals were diagnosed. Written informed consent was provided by survey respondents and audio consent was obtained prior to interviews. Ethics approval for this research was obtained from The Sydney Local Health District Ethics Review Committee (Royal Prince Alfred Zone. Approval: 2021/ETH01439).

The interviews were conducted face-to-face or over Zoom, depending on participant preference. Interviews ranged in time between 31 min and 1 h 9 min. They were conducted between May 2022 and May 2023. Interviews were audio-recorded, professionally transcribed, and checked for accuracy. The interview guide was developed by the research team.

Those participating in the interviews were asked about their experience of receiving the HIV diagnosis, how they felt, their fears, thoughts, what they found helpful at the time and what was not helpful. Participants were asked about their experiences of post-diagnosis health care, and the impact of the diagnosis, in particular their intimate relationships and sexual confidence. The participants were allocated pseudonyms in this paper to protect their privacy.

As there were fewer survey questionnaire respondents than anticipated, the survey was primarily used to recruit participants for the interviews and we do not discuss the survey findings in this paper. Thematic analysis was used to analyse the interview transcripts, with a focus on identifying common patterns of meaning related to experiences of diagnosis, care, and living with HIV.²⁶ The transcripts were read through multiple times with margin notes made, then coded for common concepts and topics. The investigators discussed the concepts and found the issues raised by participants could be refined into three broad themes, which are presented in this paper.

Results

Of 123 invited participants, 23 people completed the online survey (18.7%). Of those, 21 (91.3%) expressed a willingness to be interviewed about their experiences with 14 individuals (60.9%) attending for an interview.

Of the 14 participants who were interviewed, 8 were born outside Australia and Aotearoa New Zealand. Five were born in Asia, two in Africa, and one in South America. Twelve people described their sexual orientation as gay, one as heterosexual, and one as bisexual. Twelve men were in paid employment, one was a full-time student, and one was retired. The age range of the interviewees was 24–67 years (median 33).

We identified three themes from the interviews, described below.

Discussion

In the era of U=U and TasP, people recently diagnosed with HIV in this study experienced HIV diagnosis as a life changing event, with the stigma of the virus impacting on wellbeing and their confidence with sex and dating in the short and long term.

The shock and distress experienced at the time of diagnosis in the current era has been documented in other research.^14,18,19 While HCWs focus on outcomes such as reaching an undetectable viral load, there also needs to be greater attention on enduring issues such as psychological health and the impact of stigma, which persist after diagnosis and treatment uptake. We found that the level of distress at diagnosis, the ongoing impact of stigma and reduction in sexual confidence was experienced by most of our participants regardless of cultural background. However, those on temporary visas experienced an added burden of worrying about whether achieving permanent residency in Australia would be possible if that was their aim. Providing more opportunities to check in with patients, more time in consultations and allowing time for patients to absorb information is crucial in assisting patients to adjust to living with HIV. Wells and colleagues²⁷ identified the importance of referral to peer-based programs to assist with adjustment to living with HIV and to reduce the sense of isolation that come with the diagnosis. However, it was also found that a referral for peer support needs to factor in more than a shared HIV status, but rather consideration of peer identities related to race, sexuality, and gender.²⁷ HCWs should also consider referral to peer-based services beyond the initial diagnosis; but as one participant suggested, it took a while to feel comfortable to access peer support.

Telling sexual partners about one’s HIV status remains very difficult.^14,28 The experience was expressed as inner conflict about if and when to tell partners. Despite the NSW Public Health Law that focuses on protection of a partner rather than disclosure,²⁹ people felt obliged to tell their partners while finding that these people are the most difficult people to tell. This context of disclosure is likely to be further complicated in NSW, where affirmative sexual consent laws have been introduced.³⁰ The law includes specific reference to the use of fraudulent inducement to persuade a person to have sex. If an individual is asked about their HIV status and lies, any sexual activity that follows may be considered non-consensual.³¹ Thus, navigating sexual relationships remains a complex and potentially anxiety provoking issue for some PWHIV and may lead to reduced sexual pleasure and intimacy. Stigma, whether internalised, anticipated, and/or felt, continues to be the biggest barrier to psychological and sexual adjustment to diagnosis. Other research^14,19 have emphasised the need for HCWs to focus on the impact of stigma as well as viral suppression and physical wellbeing. In our study, the negative impact of stigma on sexual lives was prevalent. Those who reported no change in their sexual life were the minority, and this often related to being in an existing relationship at the time of diagnosis. The sense of loss experienced by men was evident, with some reporting that they had given up on ever having a long and intimate relationship, and others reported losing their sexual drive completely.

Although HIV treatment may appear to be much simpler than previous generations of antiretrovirals, it is important that HCWs do not make assumptions about an individual’s health literacy. Dissonance in communication between healthcare professionals and patients has been identified in previous research. McCormack and colleagues’³² research at Sydney Sexual Health Centre suggests that models of care for PWHIV assume high health literacy and may not support individuals who have barriers due to low health literacy and people for whom English is not their first language.³³ This was evident in our study, as the sample comprised many culturally and linguistically diverse people. Some participants in our study reported that the medical information was not understood, or that they had difficulties knowing how to communicate concepts such as undetectable viral load to sexual or dating partners. For individuals born overseas, further support may be critical to ensure that they can better understand health information. In bringing a cultural lens to the discussion, cultural support workers can bridge the gap between the medical information received by the client with the aid of an interpreter and understanding the complexity of the information. Some participants noted that while they felt very supported in the early period after diagnosis, afterwards visits became more perfunctory and routine. The reasons for clinic visits became getting blood tests and a prescription rather than longer appointments where psychosocial issues could be explored. As a result of our study, clinic staff at RPA sexual health now address this gap by checking in with patients 1 year after their diagnosis about the experience of living with HIV and the impact, if any, on their sexual confidence. Also, clinicians have been encouraged to explore any experiences of stigma, internal or external and remind them that counselling and peer supports are available to them at any time.

This study has some key limitations. The sample comprised participants attending one clinic site, and a small number of respondents completed the survey. While this resulted in fewer potential qualitative interviews, we were still able to generate a rich analysis from the interviews, which comprised a large proportion of participants from culturally and linguistically diverse backgrounds, and a diverse range of ages. Our analysis focused on what the clinic could learn from this cohort of patients diagnosed in the past 5 years, and our findings build on and affirm insights related to stigma and care observed in other studies.^14,19,27

Conclusion

Our study highlights the need for health practitioners to provide psychosocial support to people diagnosed with HIV, beyond the point of initial diagnosis. Enabling individuals time and multiple opportunities to ask questions and absorb information is valuable, especially in the context of poor health literacy and different cultural understandings of health care. Concise and consistent messaging are important in HIV care. Counselling, cultural support and peer support are especially valuable, and people may need to be reminded that these services exist, acknowledging that they may not be ready to engage with other services during the initial period of shock following diagnosis. The findings from this study suggest that it would be valuable for HCWs to specifically ask questions about sex and dating with patients over time, which we have implemented at RPA sexual health because of this study. The emphasis on once or twice-yearly short visits for HIV monitoring, while convenient for some, may make it more difficult for some patients to be able to explore holistic challenges they are facing in their lives with an HCW. Affording opportunities to open further conversations about these topics may enable some people with HIV more ways to address stigma and engage in support.