Table 4 Categories and codes identified (interviews)
Categories | Codes | %* | Examples |
|---|---|---|---|
Friendship and pain interference | Satisfaction with their friendships | 78.57 | “If I tell them what’s going on, they usually help me, and yes, the truth is that I think we can talk about almost anything …” [Boy, 14 years] |
Something to improve about friendships | 21.43 | “… it would increase trust.” [Girl, 14 years] | |
Performing physical activities | 57.14 | “If I see that they might tell me we’re going to walk to the other side of the city, I might walk a while and then get the bus or just take the bus, or I don’t know …” [Girl, 15 years] | |
Feelings about friendship and JIA | Feeling different | 57.14 | “I felt physically different when I was medicated, I mean, I was really bloated because of the illness and really bloated because of the medication …” [Girl, 14 years] |
Feeling criticized by peers | 35.71 | “One of my classmates 1 day called me -fat ankles- and said that I was pretending...” [Girl, 12 years old] | |
Not feeling believed | 35.71 | “I have had to learn to be patient with people … because not everyone believes it …” [Girl, 14 years] | |
Not feeling understood | 28.57 | “...they don’t understand... and they don’t ask me because they don’t dare. They know I have something, but they don’t know what it is...” [Girl, 15 years old] | |
How they socially cope with JIA | Self-disclosing that they have JIA | 78.57 | “I think I don’t have anything to keep to myself, that is, I can say everything, and with my friends, I don’t care whether I tell them or not. … Well, if a new kid comes, I won’t go and tell him –Hey, I have arthritis-, but if the topic comes up, I will tell him … I’m not embarrassed either or anything like that … Most of them are friends from a long time ago, and they already know about it, and so they don’t even ask … If they are interested, I explain it to them, if it’s like – Why don’t you do gym?- I tell them for no reason and that’s that.” [Girl, 13 years] |
Using communication skills | 42.86 | “I usually try to reason with them and explain to them that this isn’t acting, that I would not use the disease to be dramatic, that this is something serious.” [Girl, 14 years] | |
Maintaining activities with friends | 35.71 | “If I am, for example, in the discotheque, well I sit down, and even though sometimes they say –No, I’ll stay with you.- and I say –No, you go and follow, I don’t mind- And if I see that I feel better, I follow. But … I try to stop a little, and when I see that I am getting better, well, I go on, even if I’m a little weaker.” [Girl, 15 years] | |
Minimize pain Ignore negative comments | 35.71 28.57 | “…. But we don’t usually start to talk like … -It hurts and I sit down … -. No, it’s like, it hurts and continue on.” [Girl, 14 years] “I usually ignore them and say –you know it hurts, you don’t have to pay attention to them-” [Girl, 14 years] | |
Laugh at pain | 14.29 | “When I’m in class and I have pain on my leg and I cry out - pulled muscle!- And then they look at me and laugh and I joke because I’m already used to it.” [Girl, 15 years old] | |
Offering a benefit | 14.29 | “Sometimes I say -Well, my parents pick me up with car- and I invite some friend who lives nearby to come with me by car.” [Girl, 15 years old] | |
Needs to better socially cope with JIA | Information | 28.57 | “… because at the beginning, they only said –the pain is like that but we don’t know why- if they had said that it would keep me from doing things, well I would have accepted gradually, and not all of a sudden, that I would have to stop dancing.” [Girl, 15 years] |
Physical Help | 21.43 | “When I’m in the middle of a flare-up, I mean, when I’m bloated or having a flare-up, they have to help me to climb the stairs sometimes, even though it seems stupid …” [Girl, 14 years] | |
Friends not feeling sorry for them | 21.43 | “… but it’s like, it’s not that it affects me a lot, but I prefer that they don’t say –Poor thing- because it’s something that doesn’t affect me very much and there are people who are suffering a lot more than I am, and they really are poor things, so to speak.” [Girl, 13 years] | |
ICT use and perceptions about an online resource for JIA | Access using a smartphone | 92.86 | |
Speaking with friends | 64.29 | ||
Searching for information | 42.86 | ||
Watching films, series or listening to music | 35.71 | ||
Playing | 21.43 | ||
Using social networks | 85.71 | ||
Usefulness of an online resource for JIA | 100 | “It’s pretty interesting because it has to help you a lot and, well, even though you don’t have them (friendship problems) it will always help you in some way, I suppose, the truth is that it can be really good.” [Boy, 14 years] | |
Characteristics of an online resource for JIA | Include general information | 64.29 | “As advice, a person who gives advice to others, well, about the topic of friends, or changes in mood, pain … and all those things, and so that person, they can help a lot, to know what to do or what’s wrong with her …” [Girl, 12 years] |
Interactions with other teens with JIA | 50 | ||
Interactions with someone experienced | 64.29 | ||
Health professionals should be involved | 57.14 | “Doctors or a psychologist or someone like that who has experience or knows about that.” [Girl, 12 years] | |
People without experience should be involved | 28.57 | ||
Chat | 28.57 | ||
Forum | 21.43 | ||
Web/blog | 14.28 |