Socio-demographic characteristics of the participants

The mean age of participants was 21 years with 1.9 standard deviation. Majority (61.2%) were females, lived in urban areas (74.4%), from central Uganda (68.7%), and were reportedly single in regards to relationship status (73.7%) though sexually active. About 76.1% of participants had attained secondary or a higher level of education and involved in casual work (43.8%). (See Table 1).

Prevalence of HIV status disclosure to sexual partners

Overall, disclosure of HIV status among participants was low at 45.2% (95% CI: 39.2–50.9). (See Table 1) Majority of those who had disclosed were female (76.4%), had a suppressed viral load (90.4%), and only slightly less than 2/3 had one sexual partner (64.6%). (See Table 2).

Factors associated with HIV status disclosure to sexual partners of YPLHIV

Adjusted for other variables (as indicated in Table 2), participants were less likely to disclose their HIV status to their sexual partners if: (1) aware that their spouse/partner was not living with HIV compared to those who knew their partners as living with HIV (aPR = 0.6, 95% CI: 0.5–0.7); (2) who had known their HIV status for more than a year at the time of the study compared to those who had known it in a year or less (aPR = 0.2, 95% CI: 0.1–0.4); (3) did not know their viral load suppression status at the time of the study compared to those who knew that they had a suppressed VL (aPR = 0.4, 95% CI: 0.1, 0.9); and (4) were not aware that with an undetectable VL, one could not spread HIV to his/her sexual partner compared to those who were aware (U = U) (aPR = 0.7, 95% CI: 0.5–0.9). On the other hand, YPLHIV were more likely to disclose their HIV status to their sexual partners if: (1) they had one or no biological parents alive as compared to those who had both parents alive (aPR = 1.4, 95% CI: 1.1–1.7); (2) had two sexual partners compared to those with three or more ( aPR = 1.7 95% CI: 1.1–2.6); (3) originated from the northern region of the country compared to the central region (aPR = 1.9, 95% CI: 1.1–3.3); (4) were Catholic or Muslim compared to those who were Anglican (aPR = 1.6, 95% CI: 1.2–2.1), (aPR = 1.6, 95% CI: 1.1, 2.3) respectively. See Table 2 below.

Barriers and facilitators of HIV status disclosure to sexual partner by YPLHIV

Out of the 16 interviewed participants, most participants (81.2%) were aged between 21 and 24 years, the males were 9 (56.2%) and females 7 (43.8%). 7 (43.8%) of the participants reported being in causal sexual relationships. Adopting the Health Belief Model, barriers or facilitators of HIV status disclosure have been organized into constructs of: perceived susceptibility and perceived severity which both contribute to the perceived threat of disease, cues to action, self-efficacy, likelihood of action, and perceived benefits vs. barriers to HIV status disclosure.

Perceived threat

The perceived threat was assessed under 2 sub domains namely:

Perceived susceptibility to consequences of non-disclosure

Some participants perceived the burden of non-disclosure was a threat to their psychological and physical wellbeing. The YPLHIV feared possible illnesses that may arise due to poor clinic appointment keeping and inability to achieve adequate ART adherence as a consequence of non-disclosure. This gave them a feeling of being susceptible to ill health and as result, this fear facilitated their disclosure to the sexual partners of some participants.

… that is the most burden of a secret that I have. I feel that if tell her I will have lifted off the heaviest load from myself. I will feel free whenever I am with her, even if it comes to taking the ARV tablet in her presence, I will be free without hiding.(20-year old male).

I really don’t even know, because by that time, I think I was not with a sound mind enough because I was too stressed, so I told her. (24-year-old female)

And if I am at his home and I have to go to hospital to pick my drugs, where will I tell him that I am going to, because you can’t tell him all the time that you are going at your parents’ home. Then I said let me tell him. (21- year-old female)

Perceived severity of non-disclosure consequences

Perceived severity in this context referred to how the young people living with HIV looked at the seriousness of the consequences of not disclosing their status to their partners. Many YPLHIV who participated in the IDIs cited that with a suppressed VL, they could live together with their partners without them contracting HIV, having learnt about undetectable VL = un-transmissible HIV (U = U). Such YPLHIV did not disclose to their partners as they perceived no serious consequence of their partners contracting HIV.

Personally, I might fail to tell her that I am living with HIV but my viral load is suppressed because I take my drugs well and I cannot spread HIV…(20-year old male).

However, some participants were worried of the consequences of non-disclosure such as loss of trust and at worst futile ending of their long-term relationships with their sexual partners. As a result, they disclosed their status to them as one of them explained:

…I thought I would get married to a person of my status because there is a boyfriend I got and my siblings did not want him for me, and they disclosed to him. Then he got very angry because I had not told him, so I told this one because I didn’t want to repeat the same mistake. (21- year- old female)

Perceived benefits and motivation to disclose

Some participants thought it was useful to disclose their positive status to the sexual partners in order to protect them from acquiring HIV through taking extra precautionary measures that reduce the risk of spreading HIV by the sexual route. This was a facilitator for disclosure to sexual partners for a number of participants

I told my girlfriend,…that I am living with HIV…, for her she is negative and me I am living with HIV, so to protect her from acquiring HIV, (20-year old male)

Moreover, some participants reported receiving encouragement from peers and healthcare providers to disclose, because many other people are living with the virus.

I am thankful because we used to have meetings here every Saturday and they helped me to take away that fear. In those meetings there was a lady who told us that, any one should not fear to disclose to his or her partner that he has HIV. (24-year-old male)

It gives them peace of mind, to know that one’s partner is also aware of their HIV status and if not living with HIV takes measures to protect themselves against contracting HIV having been disclosed to as one of them narrated:

So, she told us not to fear because even that person you meet, he or she might be positive. So, don’t fear to disclose to your partner and it also helps to reduce on the spread of HIV.… Yes, it helps in not spreading it, because that person is very aware that the person I am going to sleep with is on ARVs…(24-year old male).

Other participants deemed it necessary to disclose so as to benefit from social support and the fruits of having their partner as a treatment supporter/buddy, reminding them to take their medicines and leading healthy lives together.

It was once there but I told her because all of us we have to be healthy, such and such time you can remind me because I may be thinking of some issues or when I am busy and the time (for taking ARV medicine) reaches, I told her if the time reaches you can remind me but not in public because there might be visitors, at least you can call me privately and tell me the time has reached, I can understand it.(24-year old male)

Disclosing to one’s partner was perceived as a form of building trust and strengthening the foundation for long lasting and fruitful relationships by some YPHLIV with their sexual partners. For some, this came from previous lived experiences that they foresaw happening again if they did not disclose to their partners or if there was accidental disclosure as per the excerpts below.

… they disclosed to him, then he got very angry because I had not told him, so I told this one because I didn’t want to repeat the same mistake. (21-year old female)

Maybe the other reason which is on a positive note would be; the reason why I am being pushed to tell her is that in most cases when you tell someone and she is able to understand you, there happens to be trust. (20- year old male)

I feared that if I don’t tell her she will land on my documents because I have a book which we use, she can read it and even sees the drugs. So, I said if I hide it and she finds out, it will be very dangerous and it can make her feel bad, so that is why I told her…(23 year old male).

Also, interestingly, one participant cited that some young people use disclosure of one’s HIV status to the sexual partners as a means of ending unhealthy or financially exploitative relationships. He reported that the sexual partners might not continue with the relationship if they learnt about a partner’s positive HIV status.

There are even people who always intend to get rid of people…You can find someone, they are living with HIV, but the pressure they get from the wife prompts them to tell them the truth and for the sake of getting rid of her. (19 year old male)

Perceived barriers to disclosure of HIV status to sexual partners

Even with intentions to disclose, some participants felt there had been barriers to doing so. Some participants reported that fear of their partner's reaction prevented them from disclosing their HIV status to them. This ranged from thinking that the relationship will end, rumours being spread about their HIV status, being negatively judged or worse still they may experience intimate partner or gender-based violence and possibly death in form of homicide. These perceived possible negative effects of disclosure inhibited YPLHIV from disclosing their HIV status to their sexual partners.

I am scared and the things I am scared of are like two; I might lose her or maybe another worry is that it might not end at that/there, it (the information) might be spread to other people. Or maybe we can even breakup and she ends up saying; ‘that is why you wanted to transmit HIV to me.’ that is why I am scared when it comes to telling her.(20- year old male)

The fears carried by YPLHIV are sometimes cultivated by their friends whom they often consult regarding their decisions to disclose:

…it’s still scaring me. because I was very ready, but still I have to first get advice and every person I get…, even that friend of mine just told me don’t bother the man will kill you. (22 year old female)

Other participants, explained the fear of partner reaction to have come from their relatives, who cited possible severe consequences, while for others it was upon advice from their health care providers to delay disclosure to their sexual partners until an appropriate time. Consequently, the YPLHIV were discouraged from disclosing their HIV status to their partners.

.before going there, my grandmother told me that do you want the man to cut you into pieces after telling him or to kill you? Since then, I have never told him anything about that because my grandmother made me afraid, she told me scary words.(22 year old female)

So, when I got him, there is a counsellor here whom I consulted…… she told me when time comes you will tell him but don’t tell him now.(24-year old female)

Indeed, some YPLHIV reported experiences of strained relationships with their sexual partners after disclosing their HIV status

The relationship stayed for a bit, but it didn’t last that long and the results were not good.…. it affected our relationship, for some time. For a time being after disclosure, it was well off, it was fine, it was okay it was stable and it had no much effects but; on the later days, things changed a bit.(24-year old male)

Participants who knew that suppressed HIV viral load minimized the risk of transmission of HIV to their sexual partners (U = U), did not hold the perception that their partners would be susceptible to consequences of non-disclosure especially HIV transmission. This in return inhibited disclosure of HIV status to their sexual partners, because they believed there was no threat to their health or that of their partners.

Personally, I might fail to tell her that I am living with HIV; my viral load is suppressed because I take my drugs well and I cannot spread HIV…(20-year old male).

Yes, I thought she might not take it, and decided not to disclose to her, because I knew that I can’t transmit HIV to her. Then why would I tell her? So, I said may be with time, up to when she discovered it by herself.(24-year old male)

Some participants perceived their partners to lack of confidentiality. As a result, they opted not to disclose to them about their status for fear that they would tell their private information to none significant other persons.

… others fear to be talked about because if someone gets to know your status, some of them are not good in keeping secrets, for example if he had broken up with someone, he starts discussing your issues with other people in the community, and start to talk about you and you know how rumours move in the community.(23-year old female)

Uncertainty about society and community response, in particular stigma. They felt to be at a threat of being discriminated against and complicating their life in the community after disclosure to their partners

…there was a woman who was sick then my grandmother wanted to bring her here, so when she learnt that I also get drugs from here, she spread the information in the village and told everyone how I am living with HIV. That really made me feel bad and I said to myself like living with HIV virus is really a bad thing. So, I was there but I felt very bad and stigmatized.(21-year old female)

To some participants, the nature of their sexual relationships was a barrier to disclosing their HIV status to their sexual partners. This is because they perceived themselves to be at risk of bad outcomes of disclosure. One participant wanted to be wedded first and then would disclose to the husband about her status, others were uncertain of the outcomes of their relationships while some are in long distance relationships.

.laughs, I am waiting for everything to finish (partner to first commit and be legally bound), we first do give away (traditional pre-wedding ceremony) then we wed, ah…(24-year old female).

Some people tend to give trust when in a relationship but when they separate, they start to regret telling them certain things. To avoid that, you have to first give it time and confirm whether he/she is the right person or not.(19-year old male)

Because we are in a distance relationship, she works far from where I am and I am in Kampala and she is in another distant district. The distance; what if I disclose to her and she is far and she never returns.(24-year old male)

Cues to action for disclosure to happen

YPLHIV reported several pointers which intrigued and gave them the impetus to disclose their HIV status to their sexual partners. These cues ranged from initiatives by the partners to know their HIV status, mass communication such as adverts and prior accidental exposure that inspired them to disclose their HIV status to partners as illustrated by the excerpts below.

It is from that experience I had with my ex-boyfriend, because they were always encouraging us to be open to our partners and even there are adverts on TV.(22-year-old Female)

Two female participants, who had not planned to disclose narrated how they found themselves in a situation where they had no other option, but reveal to their partners:

… he asked, the pills I found, what are they for? Then I had no reason to lie again because I was not telling him, it means I was lying. So, I was open and I told him; but he knew already, that’s what I know, because he never asked me right away. If someone is to ask you and he doesn’t know, he asks you the moment he sees the pills.(22-year-old female)

We were discussing and somehow, somewhere that came up; and he was saying: ‘if I meet a woman who is living with HIV, I will stay with her’. So, I had an idea that if he can say like this, maybe I should tell him…(22-year-old female).

Confidence to disclose positive HIV status to the partner(s)

Some YPLHIV lacked self-efficacy and feared to discuss HIV status in front of their sexual partners. Others reported being shy and perhaps feared to be stigmatized, making it hard to open up to their sexual partners, as narrated in the excerpts below.

The first point is fear; you ask yourself how I am going to tell her, then the heart starts to beat hard, you can even meet her when you are ready to disclose to her, but due to fear you fail to tell her and change the topic. Fear is the strongest weapon that limits us from disclosing to our partners. Every time if you fear your partner, and you don’t tell him/her what transpired, fear… that’s it.(21-year old male).