Table 5.

Qualitative passages exploring patient experiences during the different stages of treatment

Stage	Barrier/facilitator	Theme	Descriptor	Example quote
Treatment initiation	Facilitator	Clinic provided emotional and psychological support as treatment became available	Female, Age 57	“You know, immediately when I started joining this group, I started accepting that here I am and I'm HIV positive and here are other people, and that sister was so brilliant. You know she even used to joke about HIV and we happened to laugh. Even we were sick, but we happened to laugh. She used to say you know what? The treatment is coming, and HIV is like a dog.”
			Female, Age 38	“Yo, when I'm coming to [the clinic], they welcome with open hand, you know that welcome. I was so happy getting counselling, true counselling, getting the treatment, no problems.”
	Facilitator	Supportive counselling and informal support groups were a crucial link to treatment initiation	Male, Age 45	“Yes, they give me a counselling. They give me a counselling. They also told me if I'm positive, but it's not the end of the world.”
			Female, Age 41	“In the support groups we were always speaking about these drugs. I didn't want class anymore I just wanted drugs because I was ready for drugs.”
	Facilitator	Many expressed gratitude at the arrival of ART, indicating that they had watched too many loved ones die of AIDS	Female, Age 54	“After my husband passed away, my daughter passed away, a lot of people in my community passed away because of HIV positive. So I think I'm lucky to have the treatment.”
			Female, Age 52	“I said to them I'm ready to take it [treatment]. I was so happy, because I lost the relatives, because of HIV. So I was so blessed, and feel really honoured.”
	Facilitator	Need to support and look after family as a key reason for initiating treatment	Female, 54	“It was not an easy job, but because I want to live for my children, I, I thought it's a good idea”
			Female, Age 57	“We vow to ourselves, we said no we don't want to leave our children no, no, I'm not going to die, I will wait for that, for that treatment…Some were vomiting… but we kept on saying no, we don't want to die.”
	Barrier	Stigma and rejection when they disclosed their status	Female, Age 57	“So I have to move from his shack because I could see now that he doesn't even want to see me anymore… it was like I came with a bulk of HIV.”
	Barrier	Stigma and rejection when they disclosed their status	Female, Age 57	“So I have to move from his shack because I could see now that he doesn't even want to see me anymore… it was like I came with a bulk of HIV.”
Retention and adherence	Facilitator	Understanding what was at stake along with a determination to stay healthy were key motivators to continued treatment and retention	Female, Age 45	“One thing that motivates me…If I didn't have my treatment I think I was supposed to be passed away a long time ago. I even have two kids after I was diagnosed…two beautiful daughters.”
			Male, Age 54	“My future is bright. You know uh, if I may? I'm not saying it will happen, if I may die, I won't die with the cause of AIDS. Do you know that? I might die with something else? But not with this.”
	Facilitator	A strong support network helped individuals overcome the negativity associated with being HIV positive	Male, Age 45	“Yes, they [family] gave me support. If I'm short with something, they give me that thing.”
			Female, Age 45	“But to me you know it was emotional at the same time again and now my mother said to me give me, I still remember that day, I never forget that day he gave me a hug. I think after some years she never gave me a hug, but that day my mother gave me a hug. And said don't worry, we'll go through together.”
	Facilitator	Improved quality of life experienced by individuals feeling healthy and happy on treatment gave them hope for the future	Male, Age 54	“My future is bright. …if I may die, I won't die with the cause of AIDS. Do you know that? I might die with something else? But not with this.”
	Facilitator	Empathetic and supportive clinic staff who encouraged patients to adhere to their treatment	Male, Age 45	“The way they have treated us, they treat me nicely. It's the thing that keeps me coming.”
			Female, Age 45	“He said to me you know what I want to give you the confidence that, just because today you are HIV you're not going to die. I want you to live. You're not going to die.”
	Barrier	Side effects after initiation ranged from mild to moderate symptoms including vomiting, weakness, dizziness, skin rashes, diarrhoea and headaches, to long‐term symptoms such as respiratory issues, weight gain, sexual dysfunction and extremity pain	Female, Age 45	“The only thing that I had after they changed me from that efavirenz and Kaletra my feet…my feet were painful. But then I came to the doctor and then I tell the doctor that ai no my feet are paining and then they gave me the tablets for that.”
	Barrier	Travel was a reason patients had on occasions missed doses or stopped treatment	Male, Age 49	“I went away [for work] for a month, and then where I was, there's my treatment finished, and I couldn't come back to the clinic.”
			Male, Age 45	“I was at a funeral at home, I forget my tablets, my treatment here. So I went there in Eastern Cape without repeat, that's the only time I forget to take treatment, yes.”
	Barrier	Stigma and fear of being seen taking medication	Female, Age 45	“You know my treatment it was very challenging. Because when you go to a place like when you are working you don't have time to drink it in the specific time. Sometimes you forgot oh I must take it.”
			Female, Age 45	“I don't want to lie to you. Ja, they gave us time, but that time I'm telling you, because at 7 o'clock I was on the street, you understand. Going to work. I can't take my tablets in my bag and my medication and my bottle. Because now I'd rather this thing we afraid of people. What tablet is this? You understand. And taking them with your container, and on that container it was written because even the TV they were taking them out. So it was very scary.”
	Barrier	Hospitalization	Female, Age 54	“I had to leave it for three months and then they started the new treatment again that's when I started to get better.”
	Barrier	Deterioration in attitudes of some providers as a result of staff shortages and increased patient volumes	Female, Age 57	“And the staff were kind of busy, and sometimes they get violent. They get angry because people were many by that time…They were always shouting and cross, angry…”
	Barrier	Long queues sometimes meant patients had to return to the clinic multiple times to collect medication	Male, Age 49	“Sometimes you come here, you don't get medication, you have to come back tomorrow because it's late…they couldn't finish…”