Table 2 Caregiver level barriers: themes and illustrative quotations

 Subject 5

“He had chest pain and headache. We thought he fell on the stove, nobody saw him fall on the stove. They assumed it was because he was in pain and couldn’t move. It was 3 to 4 days he had this pain and couldn’t get out of bed.”

 Subject 18

“She had swollen feet. She had been crossing through dirty water. I thought her feet became swollen from playing in that water.”

 Subject 19

“At first I thought she was just plain lazy, because whenever I told her to do the dishes she would sit…she was always sleepy…she was tired, and she was itching, her hands were like blotches on the skin.”

 Subject 2

“I did get a [hospital] bill. I told them I don’t pay this. They said just bring proof…It’s a terrible story. You have to go for affidavits to say you’re not working and stuff like that and commissions of oath you have to get signed and then you have to take the papers in and it takes a month or two.”

 Subject 10

“[Time spent at the hospital] is un-paid time- that type of thing where you have to take off.”

 Subject 12

“When L- (patient) was diagnosed, I was off work for a month and when I came back they arranged a tea to raise funds for us.”

 Subject 14

“The blood work, doctor and medication…it was more than 2,000 Rand ($120 USD)…I’m still paying it off.”

 Subject 15

“There has been difficulty because we were not prepared for it all. Many times we had to take our bread money to go to the doctor.”

 Subject 2

“There’s not a lot of [SLE] awareness…There’s more awareness of crime and anything else.

 Subject 3

“I tell them that… it’s only in his joints and that it affects his joints and it’s not contagious for somebody else to get.”

 Subject 7

“It’s not that she must stay away from the others…No, no, no. No she’s not sick. She’s normal.”

 Subject 10

“People don’t understand. They have all sorts of ideas of what lupus is.”