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 |
35.7128.57 |
“…. 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] |
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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 |
|