Table 1.

Qualitative studies on stigma, disclosure and ART adherence (N=34)

Third-order labels	Third-order constructs	Second-order constructs	Summary definition	First-order constructs	Source(s)
Social support	Intimate and familial relationships	Spousal, peer and familial support	Participants discussed support from spouses, peers and family as critical for overcoming stigma and maintaining adherence, as was having a sense of obligation to family	Well, they encourage me, like my folks have [said] ‘you took your medication today?’ [55, p. 5] I am thankful to God for giving me such a good husband. He takes care of me well. I have given him a lot of trouble. He has spent so much money for my treatment. [54, p. 496]	[48–70, 78, 79]
		Context of male-dominated household decision-making	In cultures where men are typically heads of their households, women fear disclosing their serostatus as they fear social isolation and abandonment. Women may choose to have providers give the test information to their husbands by bringing them in for testing. In addition, in some cultures, women cannot travel alone to clinic to pick up their medications.	[After testing positive] I went back home and first kept quiet for two days. I asked myself, how can I approach him to tell him? One day when he came back, I told him, they checked my blood but they refused to give me the results until I take my spouse in for testing. I convinced him and he accompanied me. [57, p. S88]	[49, 52, 54, 57, 64, 68, 72]
		Healthy children reducing stigma	Clinical response to ART in children of HIV-positive mothers reduces stigma and often re-establishes mother's role in family	Then when she saw that since giving birth, my baby was not falling sick (the other children used to be sickly), that my baby was looking nice, did not have a rash, and was growing fast she said ‘I used to think you were infected. I had taken you out of all of my plans.’ I responded that, ‘I am not infected, don't you see my baby?’ So that's where I ended her suspicions about my being sick. Now she knows that I am not infected, which is not true. [57, p. S88]	[57]
	Compromised relationships	Physical manifestations of HIV and AIDS leads to social isolation	Physical signs of ill health may lead to abandonment or to the belief that the HIV-positive person is already dead	These days when people come to know that you have AIDS they don't want to come near you, as if you are an abominable thing (‘bakwenyinyala’). You cannot feel free. Wherever you go they start talking, ‘See that one, she is sick.’ [57, p. S88])	[55–57, 64–67, 69, 71, 72]
		Complex regimens with large numbers of medications	Complex regimens characterized by a large pill burden that required undesired disclosure in order to adhere	… things got messed up, like my schedule, wherever you go, you got to bring the medicine pack, it's even upsetting to open a bunch of medicines. [53, p. 3] Our guests were at my home; I didn't feel comfortable pulling out my drug boxes, then I forgot and missed my drugs. [74, p. 467]	[12, 52, 53, 55, 59–61, 63–65, 69, 72–74]
		Social rejection	Participants adopted strategies of concealment because they feared ridicule or discrimination if they disclosed their HIV status or if they were seen taking their medications	My company made it hard. You know, because I felt like I had to hide my medicine, you know? All, you know, for shame. [55, p. 5] Ordinary public thinks that if they mingle along with the patient means they will get HIV. [48, p. 532]	[12, 48, 49, 54–56, 59, 64–72, 76, 77]
		Treatment side-effects	Observable side-effects of medications (e.g., dysmorphic body changes) carried stigma	It wasn't hard for me to take my medicines; it was the things that people would say … [55, p. 5] The medications compounded the way I felt, how badly I felt, but I kept taking them because I knew it was temporary. [74, p. 466]	[12, 53, 55, 56, 60, 61, 63–66, 68, 71, 73, 74, 76]
	Negotiating disclosure to a child	Stigma associated with a child's HIV status	Maternal shame and stigma related to perinatal acquisition of HIV kept them from informing HIV-positive children about their seropositivity, with attendant challenges in ART adherence	The thing that disturbs me is that I always think what will I tell my child when he grows to a level of understanding and he asks me why he is taking drugs. Because even now he asks me, ‘Mummy I no longer cough but why am I still taking drugs every day?’ What will I tell the child?’ [57, p. S88]	[48, 53, 57, 64]
Self-Identity	Race/minority status	Outsider status based on race	HIV-positive persons who belonged to racial minority groups felt further stigmatized and socially isolated		[49, 55]
	Sexual orientation/relationship status	Impact of social norms on stigma and willingness to disclose	Social norms further stigmatized HIV-positive persons if the mode of acquisition was not regarded as socially acceptable behavior	In the gay community, I can't go to somebody and say, ‘I'm HIV.’ People avoid the subject. They do not disclose it. [51, p. 906]	[50, 51, 54, 61–63, 71–74, 76, 77]
	Substance abuse	Social marginalization of injection drug use intensified for HIV-positive users	Participants who actively used illicit substances discussed being unable to establish relationships with HIV-negative persons or non-injection drug users, and feeling socially isolated	Drug users, it's a group that right now everyone in society hates. Including myself, I hate myself. But the problem is [that] there is nothing I can do. [77, p. 1244]	[51, 77]
	Redefining healthy living	Self-perception as pro-active/choosing to be healthy	Participants described knowing friends who died from AIDS and not wanting to be like them; the notion of “choosing to live” [74, p. 466]	Then I had some friends die of full-blown AIDS, and I looked around and seen what a horrible death that was … And so I know I wanted to live, and I wouldn't want to send my family through that. So I knew I had to take my medicine. [55, p .4] I didn't want to start drugs, but I had seen two AIDS patients dead. They hadn't used drugs. [74, p. 466]	[52–56, 58, 59, 61, 66, 70, 72–74]
	Acceptance of status	Self-identifying as someone who is HIV-positive	Participants who had accepted their status found it easier to adhere vs. those who had difficulty taking medications because it reminded them of their seropositivity	The thing is it's my life, you know. I don't see it much if somebody comes to me and tells me that, ‘you've got HIV – you are HIV’. I don't have a problem with that because that's not his problem, that's my problem you know. As long as I know how I manage it, I don't give a damn about any other person. [56, p. 303]	[50, 56, 67, 69, 70, 73, 74]
Poverty	Economic implications of HIV	Mutually reinforcing relationship between poverty and stigma	HIV-related illness and perceived economic inadequacy leading to social exclusion	They see it as useless to assist someone who has a shorter time to live. It's like wasting money. Why assist someone who is going to die? [67, p. 1311] There is no need to waste any more money on her, give me this lady and I will put her in the car and take her to her rural home with her children. [72, p. 875] With ART, I have returned to work and earn money; friends who avoided me in the past are now more accepting of me … If I do not take this medicine as I am told, I will get sick and	[54, 56, 67, 72]
				won't be able to work again. People will also begin to avoid me again. [72, p. 877]
			Economic insecurity resulting from HIV-related stigma	“I thought that people would know my HIV status when I have illnesses regularly and am out of the office several times.” [67, p. 1311]	[54, 67, 72]
		Costs associated with treatment	Costs associated with purchasing medications or with travel to the treatment centre (along with loss of wages) made even free ART prohibitively expensive for some, leading to treatment interruptions	Even if I go for work I get Rs 100 in which 60 goes for tablets. So in the rest I have to manage the other expenses, which is very difficult. Medicines for HIV infection should be like other general medicines where everyone can afford to buy. Now I am not sure I can continue the treatment for a long time. [48, p. 529]	[12, 48, 54, 60, 61, 64, 67, 68, 70, 72, 76, 77]
Coping	Maladaptive strategies	Anger at diagnosis	Inability to accept diagnosis and anger at diagnosis, with associated inability to engage in HIV care and adhere to ART	I was mad, and I was upset, and I was in denial. And it took me five years to tell anybody that was close to me. So I kept that to myself for a long time, and I was very angry. Right now, I still don't take [the medicines] like I should. [55, p. 4]	[55, 72]
		Substance use and abuse	Consumption of alcohol and use of drugs provided a temporary refuge but also made ART adherence more difficult	… I began to skip the medication. I said to myself, ‘Well, today I'm not taking it, ‘cause I'm gonna party … [drink] Come on, I was born to party … [53, p. 3]	[52, 53, 59, 73, 78]
		Fear that drugs are dangerous and/or that HIV is a curse fuelled by stigma	Participants expressed concerns about taking medications feared to be dangerous or toxic	Rural people do still not believe this medicine [ART] works for HIV patients. HIV people will die eventually either taking or not taking ART. Why should I die by taking these malicious pills? [68, p. 3]	[12, 68, 71, 72]
	Acceptance	Knowledge that taking medications will provide benefits	Acceptance of the diagnosis counter-balanced stigma, as participants described moving on a continuum from willingness to take medications, to engagement in pro-active healthy lifestyle changes	This is your own responsibility. You know what you got. You know you got medicine to take. No matter what nobody else say or how peoples feel about it, you got to take care of yourself first. [55, p. 4]	[54–56, 58, 59, 66, 67, 69, 70, 72–74]
				During [the] last 5 years, taking medications showed me its benefits. My CD4 cells [sic] count was 80, with high viral loads, but now I am okay. They actually helped and gave me more longevity. [74, p. 467]
	Mental wellbeing	Treatment of depression and anxiety related to diagnosis	Treatment of depression resulting from HIV diagnosis could ameliorate stigma and social isolation		[49, 57, 65, 67, 69, 72, 73, 77]
	Morality and spirituality	Notion of God's will	Participants discussed relinquishing control of their lives to God and putting their faith in a higher power to help them overcome adversity	I just want to be a living witness, that God has all power. He can do all things, and I put my faith and trust in Him. [55, p. 4–5] I believe in the power of prayers – I believe in my church. It's got hope for me … because I have a feeling that God loves us … God is the person that gave you that disease, and God is the person who can take it out from you … You have to have faith in that. [56, p. 305]	[12, 52, 54–61, 67, 69, 72]
Health systems	Importance placed in clinical support staff	Nursing and physician support to gain trust and overcome social isolation associated with stigma	Programs supporting social support and building trust with the adherence nurse or doctor were described as essential for people who reported stigma as a barrier to ART adherence	I felt so alone. It's nice to know that somebody does understand what it is all about and you can depend on that person. [75, p. 117] I trust the doctors and nurses. Therefore I started the drugs. [74, p. 466]	[50, 55, 58–60, 62, 63, 67, 69, 70, 72–75, 80]
		Support in designing tolerable combination of medications that are easily available	Participants felt it was easiest to adhere if they were on tolerable medications and if providers were available in the event of adverse side effects vs. those who feared taking medications because of potential side effects or complications. It was also important to ensure that there were no stock-outs and that medications were easily available.	I didn't know the advantages of medications, I feared the complications; therefore, I started it very late. Actually, it was [a] wasting of my time. [74, p. 466] We can't have any plan, because we don't know when supplies will fail. Some people can get medicine and some can't. [80, p. 317]	[55, 58–60, 73, 74, 80]
	Family-driven treatment	Establishing treatment for all members of the household	Treatment to all HIV-positive members of a family (including spouse and children) provided support to overcome stigma and improve medication adherence		[54, 57]