Table 3.

Summary of domains (n = 7)

Domain	Examples
(1) Physical function: ability to perform normal activities of daily life Components: instrumental activities of daily, living recreational activities, employment/vocational activities	(1) I can’t use a cashpoint, because I kept taking the card out but forgetting and leaving my money, I think, or I can’t use a self-service in a supermarket…I have to queue with a trolley, because I get…I don’t…I can’t… do things anymore (P05: Male, 64, severe CI)
	(2) Quality of life I would think is (to) do things and get out…which I don’t do really anymore, I’ll be honest…I’d go up [to bed] at 3 o’clock, put the TV on, watch that with the dogs…that’s my choice, I don’t have to, but it’s just easier that way. (P02: Male, 55, moderate CI)
	(3) I thank god for work…I think work have been really good at supporting me mentally, my manager knows about my [cognitive] problems and they are quite flexi, I can take time out…I’m well supported, it makes a huge difference to everything (P23: Female, 49, mild CI)
(2) Cognition: Cognitive symptoms Components: memory and executive functioning, concentration/attention, communication	(4) Sometimes it gets very hard and bad because you are round and round on the same thing, you get frustrated and anxious about what you have done or what things you are supposed to do on that day. Especially, if I’m somewhere busy…its like your memory feels as though you’ve got a cloud, a fog over it that impacts everything (P15: Female, 63, moderate CI)
	(5) It’s a daily struggle to remember things and concentrate… if I’m having a bad day, with my brain…it’s like I can’t do anything…I will try to go to work, but I can’t even concentrate on what my boss is saying to me, or what my friends at work at saying…and it’s so annoying cause, upsetting actually, like, I don’t want to be this useless person (P07: Male, 64, moderate CI)
	(6) Yeah, it’s difficult isn’t it? Not being able to stand up and say what I want is really frustrating, and I don’t want to be “Who’s that idiot over there?…there is this sense I’ve lost it completely (P10: male, 68, Severe CI)
(3) Social connectedness: ability and willingness to form and maintain social relationship Components: social engagement and social withdrawal, social support	(7) You end up slowly getting rid of them [friends]…you start to put distance because…it’s like not wanting to meet people because it was difficult and I don’t want to go…you then start having missed calls and you think “Oh no, they want that, I can’t cope with it”. So…everybody starts to pick up [on it], like, “Oh he’s…” so I lost a lot of friends through that. (P05: Male, 64, severe CI)
	(8) I don’t have any friends, so I don’t see anybody…I’ve never had many friends and now I definitely don’t, I stopped when my memory happened…I’ll struggle or look stupid, and I can’t get there so it’s a no–no…I speak to the neighbour and my mother, but she’s in Scotland so I never see her, neither of us would travel (P18, Male, 49, mild CI)
	(9) I think the fact I don’t live on my own, I’ve got my daughter, she’s 17, my husband, and I speak to my sisters all the time…I’ve got friends…most of them are nurses…I’ve got really nice neighbours…I’ve got quite a few things which help a lot to be honest, they keep me going [laughs] (P23: Female, 47, mild CI)
(4) Stigma: experiences of stigma and discrimination and impact on self (related to both HIV and CI) Component: enacted and self-stigma, barriers to help-seeking (social, medical, welfare)	(10) Good QOL is being able to tell people what is wrong, have someone to talk to you know? (P17: Male, 59, mild CI)
	(11) Perhaps it does get in the way of you accessing other healthcare…I was resistant to go to the doctors again about my memory stuff, because of having to bring up the HIV stuff again…so that’s why sometimes people will not tell anybody there is a problem (P07: Male, 64, moderate CI)
	(12) It led back [when I spoke about cognitive problems to employers] …when she knew I was HIV, she told another woman, and they were so rude, awful to me. I left, [and] now I worry about working and it’s just affected me…how I feel about myself, it was very traumatic, very upsetting (P13: Female, 52, mild CI)
(5) Self- concept: perception of self Components: self- esteem and confidence, identity, sense of independence, concerns about the future (future-self), attitude and personality	(13) It’s just another thing, I’ve not achieved much because of my illness [HIV], and this is the last straw really…in terms of me doing anything productive or getting a job… there’s not much hope for me, you know, making much of myself (P11: Male, 38, mild CI)
	(14) You’re not yourself, you’re not yourself, it’s like you’ve lost yourself…when you can’t remember anything, constantly relying on people to remind you to do stuff. I think it’s horrible and it’s got a great impact on the quality of life you can have (P23: Female, 47, mild CI)
	(15) I’m a strong person, after the shock of it [CI diagnosis] but I’m resilient, I know this. You just have to try to enjoy life, not worry too much and get on with things (P25: Male, 55, mild CI)
	(16) I do worry about it [cognitive deterioration], but in a jocular manner…I worry about forgetting my family, them having to deal with me, my goodness, that worries me…it’s worrying to know that one person can have a disease which makes you forget who you are…but it happens. We can’t help it, can we? (P19: female, 61, mild CI)
(6) Acceptance and control: acceptance and understanding of health conditions and perceived control over health outcomes Components: understanding of health conditions, sense of control over health outcomes, Employment of compensatory and remediation strategies	(17) I was grieving about it, given what you are losing basically and then [I’ve] come to terms with it, with HIV, I can actually say that I have mastered it…because I’ve been actually trying to understand it in full, how it works…and there are actually lots of people with HIV so it doesn’t particularly scare me anymore, I take my pills and I should be okay…I am learning about my memory now and it won’t necessary get worse, which makes me feel better (P01: Male, 38, moderate CI)
	(18) It’s from what we call a demon, I find myself sick…I think continually like taking medication, I don’t know what it is, what it’s for…I don’t understand, and I think where has my life gone…maybe I’m not sure [what caused my CI], I’m hoping you can tell me, so then I can know what to do about it (P24: Female, 45, mild CI)
(7) Physical and mental health and wellbeing Components: physical health, mental health, global health appraisal and life satisfaction	(19) I do mindfulness and some yoga now, which I think makes me more present with my memory problems so I’m going to forget things less…well that’s the idea, and I am drinking a lot less now which I’ve been told will help…yes, there is some hope for me I think (P25: Male, 57, mild CI)
	(20) This has just thrown me a bit, I’ve been good the last 10–15 years [referring to prior depression], been able to get on and stuff…but it’s very, very worrying, forgetting things all time, it does, it does make me feel pretty miserable if I’m being honest (P06: Male, 50, mild CI)
	(21) I just like to look out there, I think of the friends I’ve lost and go “Wow, how lucky am I, you know, to be alive and to be able to experience this”, and I like to check in with myself every now and again…just to thank my lucky stars (No.09: Male, 44, mild CI)
	(22) It isn’t something that’s easy [CI]…It doesn’t make you a very happy person. And happiness depends on everything…on the state of your mind being able to cope with life, it’s just always there (P24: Female, 45, mild CI)