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Table 1 Results from thematic analysis of interviews transcriptions

From: Development and validation of the CAREGIVERS questionnaire: multi-assessing the impact of juvenile idiopathic arthritis on caregivers

TopicsInterview transcription
Economic impact“Where are we going to get us [so much money]? Because [my husband] works in a transport truck and I work at home [handmade] manual labor. We have four children, everyone goes to school, and we pay for electricity, water, telephone.” (Female, 31 years old)
“Yes, worrying because right now we have not reached the limit that we have to buy [medication], but the moment they say ‘you know what? You already have to buy the medicine’, I do not know how we are going to do it. We have to see how we do it: sell, do, get, borrow, pawn. I do not know, or work more. The problem is already there latent.” (Female, 28 years old)
Coping“Do not leave her alone, support her in everything, and ask God to help us to move forward and face the disease.” (Female, 34 years old)
Family care roles“I used to take decisions about care of him [patient] regularly because he [father] worked at a certain time of day and I understood it that way, I said we cannot walk, I carried him [patient] and I have to do it, when it was maybe a stronger decision, then I call to my husband” (Female, 28 years old)
Impact of diagnosis“When they confirmed the diagnosis... Ah, I felt calmed because I said well, we’ve been playing like little balls from one place to another, and when they find the problem, it feels a relief because it says well, they know how to control it, I know that there is no cure, but yes, one feels bad definitely.” (Female, 30 years old)
Mental Health“I was very depressed to see her with this illness, and to think that she would be like this for the rest of her life.” (Female, 41 years old)
Couple/mate relationships“I always felt very lonely with her, because her father did not pay attention to her. He never supported us, he didn’t believe in the disease, he said that she wasn’t sick.” (Female, 38 years old)
Impact at work“I asked permission [to leave work] if there was any question during the morning, but no, I did go ahead, because he [patient] transmitted [to me] his strength, because he has always been very strong, my son.” (Female, 31 years old)
Religion“The religion definitely has helped me. Something that I know, is that God is love.” (Male, 30 years old)
Knowledge of the disease“Not much, I know what he [doctor] has told me, I have read about the disease on the Internet, sometimes I have not wanted to go too far because one is afraid of the unknown; yes, then, I prefer, sometimes, not to search, [not to] find.” (Female, 37 years old)