Table 2 Interviews: Themes emerging from narratives (N=15)

Emotional and social impact

The fact that (it’s, a) it’s a scary thing for people that don’t have it and a scary thing for people that do have it, it’s just a terrifying thing… (woman, 28 yrs).

What disturbs me most about HIV is even though there is a lot of information out there, there are a lot of people that still are quite ignorant and they’re still quite fearful of HIV (man, 31 yrs).

That my mother will find out…(man, 42 yrs).

I am scared that I tell them and then it will be different. They would treat me differently (woman, 28 yrs).

I’m afraid of dying…getting sick and not being able to take care of my children. I’m afraid of my children finding out like that’s probably my biggest fear in this world is when my children find out (woman, 32 yrs).

Oh massively restricted in the sexual sense (woman, 26 yrs).

The fear that something may happen to me and I’m in a car accident....and someone tries to help me and I’m bleeding profusely and I pass it on to them (woman, 32 yrs).

Sometimes if I’m cooking… silly thoughts of cutting myself (man, 37 yrs).

When they talk about people there is a disgust in the way they talk there’s disgust and it really deeply hurts because I have HIV and I don’t think that I’m disgusting (woman, 28 yrs).

Sometimes it’s really difficult… like can be very isolating. Sometimes I feel like no one really understands and it’s very secretive as well like no one really knows, I don’t want people knowing (woman 32 yrs).

…the friends that I did have put distance between us…. Separated themselves from me because it’s all got a bit hard or whatever (man, 47 yrs).

That fear of possibly infecting him. I think the guilt eventually killed it (man, 42 yrs).

Physical impact

I went straight back to work as soon as I could- (work) was just a very lucky distraction to have (man, 38 yrs).

I get tired very quick but don’t generally stop me doing anything I want to do…my problem is not wanting to do anything…it’s the motivation I don’t have (woman, 41 yrs).

Tired and exhausted both (man, 66 yrs).

I might have three or four bad days in a row and I have to ring up and take it off work and there’s no employer… they can’t put up with that for too long (man, 47 yrs).

…any sort of activity that involves danger, all the risk of you know getting cut or something like that I just don’t do (woman, 32 yrs).

Treatment impact

I look at them making me sick, making me vomit like just want to vomit already just looking at them (woman, 28 yrs).

The drugs, the drugs are great. I can’t complain I haven’t had any side effects (man, 55 yrs).

None… problem is just taking them in front of people (man, 37 yrs).

I never had a eight hour sleep… there was not such a thing as an eight hour sleep (man, 44 yrs).

Perceptions of quality of life

The way you do to get to do the things you like to do, like what kind of barriers do you face like - do you have the support networks and all that sort of stuff (man, 66 yrs).

… means enjoying yourself, being happy… feeling good within yourself and about the people around you. I don’t have that any more (man, 47 yrs).

I think within the realms of HIV itself, I would think that my health is good… um… but within the realm of the general population, I would say that my health is quite bad… (man, 42 yrs).

Since my medication my life’s actually been enhanced (man 37 yrs).

I’ve got the best drugs, good treatment at the hospital - I can still work (man, 38 yrs).

It’s been up and down but it’s now it’s pretty good according to all the numbers and results and things, I’m pretty well normal… (woman, 41 yrs).

I realised it’s all psychological really (woman, 32 yrs).

I suppose for two thirds of my life, because … I have been living with HIV for a third of my life, I lived a quality of life where I didn’t have to think about everything I just did what I wanted to do basically within ones responsibilities and obligations. Now through HIV my quality of life has changed in that now everything I do has to be considered (man, 45 yrs).