Abstract
Improved partner notification (PN) after HIV diagnosis could help control HIV among men who have sex with men (MSM). However, there is little evidence exploring what this experience is like for Australian MSM and how achievable it is in the era of the Internet and smartphones. Fifteen of 39 invited MSM recently diagnosed with HIV undertook a semistructured interview about PN. Interviews were thematically analyzed using a combined deductive/inductive approach. Three main themes arose: fear of PN and HIV disclosure, partners' unexpected reactions, and the need for more patient support. MSM found PN difficult and uncomfortable and described fear about potential repercussions of PN; however, they felt it was the right thing to do. Regular partners were more likely to be notified, and in person, because of the availability of contact information but more notably because of a sense of moral responsibility. Men commonly had few contact details for casual partners and preferred PN strategies that allowed them to remain anonymous, largely reflecting the reasons for and ways in which they met casual partners: online or through apps and predominantly for once-off, anonymous sex. Most described unexpected positive responses from partners who were contacted personally by the men. Our study also showed that participants required professional support to carry out PN, especially with casual partners, as well as support around understanding the implications of and treatments relating to being HIV positive. PN could be improved by offering more options that allow the index patient to remain anonymous, particularly when notifying casual partners.
Introduction
P
PN is the process used to inform partners of a person diagnosed with HIV (known as the index patient) that they are at risk of having HIV, and they should seek testing and, where appropriate, treatment. 7 PN has been shown to successfully identify partners at risk of infection 8 but relies on the index patient having enough information to either contact the partner themselves (patient referral) or to provide to a health professional to contact the partner on their behalf (provider referral). 7 Relevant information such as a phone number or a home or work address, electronic information such as an e-mail address, or a name from a social media or dating website 9 may be used to contact partners. However, the increasing popularity in the use of smartphone dating apps among MSM 10 may have reduced the effectiveness of PN and the proportion of traceable partners. 2 In some cases, PN may be impossible if contact information was not obtained, blocked, or deleted by one or both partners after sex occurred. With this in mind, we designed a study to understand how PN is carried out by MSM recently diagnosed with HIV, and to identify barriers and enablers of PN, including how men met their partners and whether or not partners were traceable. We also explored whether and how the future development of a website to assist HIV PN might be helpful.
Methods
MSM were recruited from three health services across Melbourne, Australia, as well as being recruited by the Victorian Department of Health and Human Services Partner Notification Officers (PNOs). The health services where recruitment took place comprised a specialist publically funded sexual health service, a tertiary hospital specializing in HIV clinical care, and a general practice who has a high patient load of MSM. The PNOs in Victoria are employed by state government as specialist contact tracers, much like Health Advisors in the United Kingdom or Disease Invention Specialists in the United States.
Men reporting sex with men who had been diagnosed with HIV in the previous 12 months were eligible for participation. At the time of recruitment, the clinic nurse, doctor, or PNOs provided information about the study to eligible patients and asked whether a researcher could contact the index patients to invite them into the study. Those who consented provided a phone number and were later contacted directly by JT and invited into the study. Participants who agreed to take part in the study negotiated a mutually convenient interview time and place. Interviews were offered face to face or through telephone. All interviews were conducted by JT using a semistructured interview schedule that contained 21 questions, most of which were open ended and allowed the interviewer to probe for further clarification or questioning. The interview schedule consisted primarily of questions about the participant's previous HIV testing; what PN advice had been provided by their health practitioner at the time of their HIV diagnosis; what contact information was available to the participant to contact recent partners; whether any PN was undertaken and, if so, who did it; how they felt about doing it; and the reaction of the partner. At the end of the interview, participants were shown either one of two existing PN websites (
Data analysis
After seven interviews were completed and transcribed, an interim analysis was undertaken by a multi-disciplinary team of researchers who have experience in PN and public health (J.E.T.), the social sciences (J.B.), and health promotion (A.H.-C.). Interview transcripts were independently read and coded by all three researchers before they met to discuss and compare data coding and interpretation (cross-coding/multiple coding). 11 Data were analyzed using a combined deductive/inductive approach, whereby themes were derived from both previous literature, the research questions, and interview schedule and inductively from emergent and recurrent themes arising from the data. 12 Although there was some level of variation among the researchers in their coding frameworks and the language used, there was strong consensus about emerging themes and interpretation of the data. At this time, it was decided that two additional questions would be added to the interview schedule to allow for further exploration of some themes emerging from the data.
After 15 interviews were complete, the researchers followed the same process of cross-coding, further refining their coding frameworks and meeting to discuss their independent analysis of the additional 8 interviews. Again, there was strong consensus around data analysis and interpretation with no salient differences noted. Researchers agreed at this point that no new themes were arising from the data and data saturation had been met.
All interviews were digitally recorded and transcribed verbatim for thematic analysis and took on average of 60 min to complete. All data were deidentified to protect confidentiality. Ethical approval for the study was granted by the Human Research Ethics Committee at The Alfred Health HIV Services (45/14) and also at The University of Melbourne (1442671).
Results
A total of 39 participants agreed to be invited into the study and 15 participated. Recruitment was difficult as 21 of those who provided a phone number for the researcher to contact them did not respond to a maximum of 8 contact attempts, including leaving up to 5 voice and/or text messages. Three further participants agreed but did not attend the prearranged interview and did not respond to follow-up messages. Owing to the difficulty in recruiting participants and their concerns about confidentiality, demographic data were not collected as part of the study, only first names and contact telephone numbers. After reaching data saturation at 15 interviews, no further MSM were invited into the study.
Of the 15 participants, all of whom had been diagnosed with HIV in the past 12 months, 10 had tested regularly and previously received negative test results in this timeframe. Four of the remaining five participants sought HIV testing because of symptoms or a recent risk of infection. Two of these four were contact traced by partners and the other two presented for HIV postexposure prophylaxis. The remaining participant was prompted to test for immigration purposes.
The three main themes directly relating to PN that will be discussed within the scope of this article include the fear of PN and HIV disclosure, partners' unexpected reactions, and the need for more PN support.
The fear of PN and HIV disclosure
Most MSM had more than three casual partners in the 3 months prior, and almost all had at least one regular partner, at the time of their HIV diagnosis. The majority of men met their casual partners online or through phone apps and described having unprotected sexual contact with casual and/or regular partners before HIV diagnosis.
There was a strong consensus among MSM that all partners should be notified wherever possible; however, regular partners were more likely to be notified, and in person, because of the availability of contact information and a stronger sense of moral responsibility and/or emotional attachment.
The contact information available for PN for casual partners was inconsistent, and largely influenced by the reasons and ways in which men met their casual partners. Most men met casual partners online or through apps as these methods were easy, accessible, offered choice, and anonymity. Men commonly met casual partners for once off sexual encounters and the majority described either blocking or deleting all contact information soon after sexual contact or did not know sexual partners' names and details to contact them, even if they wanted to. Those who did not block or delete a partner's details sometimes described being blocked or deleted by that partner, which resulted in the same lack of contact information.
You have sex and you just pretty much forget about them the next day. So I'm not going to lie to you but not necessarily you can remember them or can contact them that easily. (Participant 13)
… as a point of principle I don't exchange phone numbers with hook-ups because I don't want to—it sounds ridiculous but I don't want to give my phone number out to someone that I don't know if it's a one-time fling. (Participant 3)
Of the 15 men, only a few described always ensuring they had contact numbers for any partners:
… whoever I meet I always get a phone number, a name and I take a photo of the face—a picture of the face—for my contacts so I know who it is. (Participant 8)
In most instances, participants were uncomfortable and unwilling to contact casual partners themselves, even if the information was readily available, preferring to use methods that would ensure their own anonymity, such as provider referral PN services.
… it just seemed to me, when my doctor described me the option [provider referral services], it was the best way to do it because it was all done anonymously. (Participant 10)
Overall, participants found PN a difficult and or uncomfortable task, especially after their own recent HIV diagnosis.
I was pretty scared and anxious about having to call him and I didn't really want to, to be honest but I morally knew inside myself that I needed to tell him and find out where he's at as well. So, yeah, it definitely wasn't fun. (Participant 2)
Participants also described fearing repercussions for themselves from casual partners if they contacted them and worried about what might happen afterward.
I cannot tell them because I don't want them to come to my house and they know my place, I don't want them attacking me, like blackmailing me. I don't want this to happen, I don't want to hurt my family even more … that is my biggest concern. (Participant 4)
Participants emphasized that this fear influenced their decision-making about PN and that most would choose PN options that allowed them to remain anonymous for casual partners, such as using the PNO service. If this was not available, participants indicated that they would not undertake PN for casual partners regardless of whether contact information was available. An example of this is one participant who had mobile numbers for every casual partner but was still reluctant to contact these partners himself.
So for me I didn't want to have to do it personally, … I don't think I would have chosen to tell them myself, just because most of them I wasn't in contact with anymore. (Participant 9)
All participants indicated that there was a difference in their motivation and capacity to contact regular partners or casual friends opposed to other “one off” casual or anonymous partners.
I guess to me – it sounds bad but it would depend on how close the relationship with the person that you've slept with, if it was a one night stand or if it was a regular type … I think obviously if it was a one-time fling or someone that you're quite distant to then it's scary. (Participant 3)
Participant 1 also expressed this difference in motivation to contact a partner;
If there's somebody that maybe like your fuck buddy or somebody who is a regular partner, or someone you have some emotional connection to, not just a stranger … if it's a stranger, it doesn't really matter. (Participant 1)
Although almost all participants felt that PN was the right thing to do if contact information was available, they felt a far greater sense of moral responsibility to personally contact their regular or semiregular partners than casual partners, despite feeling anxious, embarrassed and ashamed, and uncomfortable.
I was pretty much shaking to be honest … it was definitely the hardest conversation I've ever had to have in my life and I didn't know how he was going to react or what he was going to say … (Participant 2)
But for me it was just a case of having to suck it up and do it really because I take responsibility for my own actions and I didn't think it was fair not to tell people. (Participant 11)
One participant described his feelings when not being able to find any contact information for his casual partners after spending substantial time trying to scroll through past interactions on a phone app.
So it's like a needle in a haystack situation, but it sucks because it's something that sticks in the back of your head thinking well I feel guilty that I haven't told them and they could be going around being tested as positive and not knowing or even infecting other people. So it makes me feel pretty shit. (Participant 2)
Overall, most participants found PN a difficult and/or uncomfortable task. One participant said the following straight after contacting a partner.
… I felt dirty. I felt embarrassed, ashamed—you know what I mean? … I've slept with someone knowing they've got HIV … not thinking of other people. (Participant 8).
Partners' unexpected reactions
The second theme to emerge was the unexpected reaction of partners. Some of the fear described in the previous theme stemmed from the reaction the participants thought they would encounter from both casual and regular partners. In almost all cases, however, participants' fears were unfounded, with partners' reactions described as supportive, understanding, and much more positive than expected. A number of men noted their partners knew they would not have knowingly put them at risk.
When asked whether the reaction of his partners was what he had expected, Participant 2 said:
No, it wasn't what I expected at all. Yeah, I was expecting him to—I was scared. I was scared of how he was going to react. I thought he would be angry or telling me I'm wrong or start abusing me but, yeah, very lucky (that the partner didn't react in this way). (Participant 2)
Most of the participants in this study described being pleasantly surprised by the supportive responses they received from both casual and regular partners after the partners were informed of their risk of HIV acquisition.
I was a little bit worried that I didn't know them as well as I did and they might go off. Yeah, they were great. Everybody's been great actually. (Participant 8)
Participant 11 also described how both the participant and the partners were often thinking of each other rather than themselves.
In general, the response was very thankful that I'd told them and more worried and supportive about me, than themselves, which was nice … one person freaked out a bit. So I offered to go with him to get tested, even though he wasn't someone I knew very well.
Overall, participants described the PN process as difficult to consider and carry out but much better than expected when completed.
The need for more patient support
The final theme that came through was the need for more support and resources for newly diagnosed MSM who have to consider PN while dealing with their own HIV diagnosis. Fear of how partners might react, disclosing their own HIV status, sometimes for the first time and trying to find partners while managing numerous medical appointments, was described as a stressful time in their lives and that any support they received in relation to the PN and their own new diagnosis was appreciated. Although most of the participants in this study had access to PNOs, who could support and assist them in notifying partners, many considered others in the same situation that did not have this level of support.
I think it's [PN] such a vital service I think. I mean, I think getting HIV does change you mentally and emotionally I think and you could go either way … so I think having someone to talk to is, yeah is paramount. (Participant 4)
When participants were shown and or described various other electronic options, such as a website that could assist them in letting partners know anonymously, or direct them to other relevant websites for information about HIV and a video showing examples of how partners might be approached, most of the participants thought that these would be helpful resources both for themselves in dealing with their new diagnosis and also for contacting some partners, if access to the PNOs was not available.
Oh definitely. Just having some ideas of how you're going to respond to questions or just to how they react—to reactions and stuff like that—I think that would be extremely helpful. Yeah. (Participant 11)
None of the participants indicated that they would contact a regular partner by any other means than face to face. Participant 15 reflected the general thoughts around the usefulness of an electronic resource.
I think it's a brilliant idea to have a partner notification website that you were talking about … There is one [a website] for everything except HIV, basically … Just because of the stigma still related around HIV and the pressure that they're just under at the time. So I think some sort of anonymous way to let someone know that they've been exposed to HIV would be absolutely brilliant and very, very beneficial to the community. (Participant 15)
Discussion
To our knowledge this is the first qualitative study in Australia to investigate what it is like for MSM recently diagnosed with HIV to carry out PN, and to identify the barriers and enablers to the process, including how they met their partners and whether or not partners were contacted. Overall, MSM found PN difficult and uncomfortable; however, despite this, they felt it was the right thing to do and that all partners should be notified wherever possible. Regular partners were more likely to be notified, and in person, because of the availability of contact information and because of a sense of moral responsibility. Men commonly had few contact details for casual partners and preferred PN strategies that allowed them to remain anonymous, largely reflecting the reasons for and ways in which they met casual partners: online or through apps and predominantly for once-off, anonymous sex.
Our study also found that the participants described significant fear about the possible repercussions of PN and indicated that this was a critical factor in their decision about whether to carry out PN for each partner. Although we found that MSM felt that PN was the right thing to do, they also described the most significant barriers to the process: that being the lack of information available to contact casual partners and fear of the reaction of partners they did not know well. A similar study in the United States also found that although many MSM had an understanding of the ethical desirability of informing exposed partners, they required further education to overcome barriers to PN as well as to gain knowledge of the various methods of both traditional and nontraditional notification, such as Internet PN. 13
Most of the participants in this study described positive responses from partners, both regular and casual, which is consistent with findings from a US study, wherein the HIV PN process was found not likely to negatively affect relationships. 14 Similar results were also found in a European study wherein participants saw PN as a moral responsibility but also “social suicide” and that breaking the bad news was perceived as a difficult and a potentially troublesome task, yet notifying partners was typically not as bad as expected. 15
Although there is mixed evidence in relation to the acceptability and effectiveness of electronic PN services 16 –19 for MSM for sexually transmissible infections (STIs), participants thought that having this strategy as another option for HIV could be useful. Online PN services that currently exist allow MSM to anonymously send e-cards through the Internet or text messages through a mobile phone to a partner to inform them of a risk of infection with an STI. Our study suggests that if provider referral services were not available for HIV PN and there was no other way to contact casual partners anonymously, these participants would not carry out PN for those partners. As such, it may be worth considering electronic PN services for HIV, even when the proportion of partners reached may be small. However, it would also be extremely important to consider carefully the potential for electronic mechanisms for HIV PN to be abused. Although this issue is less troublesome for curable STIs, there is potential danger that a HIV PN website could be used inappropriately and maliciously. The importance of healthcare professionals providing advice and support to newly diagnosed HIV patients around the complex issues related to PN is well documented in the literature, 20 –24 and this may still be the most appropriate way to strengthen HIV PN. Electronic supports in this context, such as a website that demonstrates PN being carried out or provides answers to frequently asked questions, may help support newly diagnosed individuals to inform partners.
A limitation of our study is that most participants were recruited from specialist HIV services in Melbourne and as such the participants were provided with specialist support during HIV diagnosis, management, and also throughout the PN process. Had participants been recruited from mainstream general practice, the results may have been different. Also, the number of participants was small and 24 of 39 eligible participants refused to participate, which might create bias in our sample. As such, these findings are not generalizable to all MSM newly diagnosed with HIV; however, the design and outcomes of the study provide a deeper understanding of the experiences of these participants. In this study, HIV PN was a difficult task for Australian MSM newly diagnosed with HIV; however, the reactions of partners who were notified during the process were usually more positive than expected. PN could be improved by offering more options that allow the index patient to remain anonymous, particularly when notifying casual partners.
Footnotes
Acknowledgments
The authors thank Alfred Health HIV Services, Prahran Market Clinic, and Tom Carter from the Department of Health and Human Services Victoria for assistance in the recruitment of participants in this study.
Author Disclosure Statement
No competing financial interests exist.