Background
Methods
Participants and setting
Procedure
Analysis
Results
Participant characteristics
Characteristic | Values | Number of participants |
---|---|---|
Age at recruitment | 11–15 | 18 |
16–19 | 3 | |
Gender | Female | 17 |
Male | 4 | |
Ethnic group | White | 17 |
Non-white | 4 | |
Age at diagnosis | <11 years | 13 |
11+ years | 8 | |
Time since diagnosis | 1–5 years | 8 |
6–10 years | 4 | |
11+ years | 8 | |
Not known | 1 | |
Type of juvenile arthritis | Juvenile Idiopathic Arthritis JIA | 19 |
Other | 2 |
Impact during adolescence of arthritis on personal identity
a. Early and late diagnosis:
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I was diagnosed when I was tiny so I don’t know any different. in a way I think it would be weird to not have it but that’s probably since I have grown up with it being part of my life, but not letting it rule it. [Female, 16 years old]
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I used to do a lot of running, and when I was diagnosed I was unable to do it. I do at times miss it, and I do feel that people saw me differently. I only say this because I was known as a runner, and when I was unable to run anymore I was almost isolated from the rest of my peers. [Female, 16 years old]
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My Daughter has never really known any different in her life as she was diagnosed with arthritis at such an early age, I suppose that has helped in a way really as she just gets on with things and knows her limitations and when to stop. As she has approached her teenager years her arthritis does get her down and when her friends are doing something that she knows will tire her out or that she just could not do she does go quite moody and frustrated. [Parent]
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b. Effects upon forming identities:
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Does arthritis affect my identity? I don’t really think it does me still can do what every other kid can do! I still do all my hobbies e.g. Judo, swimming and dance. My life is pretty ordinary if you take away all the injection and blood tests…. [Male, 11 years old]
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I am a very sociable person when I am happy on a good day, however if I am caught on a bad day with regards to my arthritis and my mood, then I can be the complete opposite. [Female, 16 years old]
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c. Impact in adolescence:
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I am fifteen years of age and have had arthritis most of my life, I was only about 2 years of age when my parents were told that I had the disease, I suppose when I was younger I sort of just got on with it, but as a teenager it can effect me in a variety of ways. [Female, 15 years old]
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We spent the first 10 or 11 years hoping that she’d grow out of it at puberty only for her to suffer more around that time. [Parent]
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Our daughter takes her methetraxate on Friday evenings. By Saturday afternoon she feels sick and is quite down. This continues until around Tuesday where she perks up and becomes her old self. Still, is this the effect if the meds or her mental state or just teenage angst? [parent]
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d. A positive force:
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but im glad that it happened in away because i made a better group of friends and the(y) did not understand at first, but they were willing to and now they are my greatest friends. [Male, 15 years old]
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If i could change myself eg: not having arthritus i dont know if i would because it has made me a stronger person… and i have faced some of my fears like operations and needles and im proud of my self for that…. [Female, 13 years old]
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e. Facing the future:
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Today I am not feeling too good. My arthritis is really playing up on me today. I feel really down and tired. Mainly grumpy and unsociable. It’s on days like this when I ask myself, ‘How am I going to cope with working in the working world when I can’t even cope with just going to college?’ [Female, 16 years old]
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“as a mother, at the moment, I’m feeling very worry about what the future holds for my son regarding his arthritis. NextSeptember he is moving tosecondaryschool, thatnormallywill be an scary time for any mother but when your child has a cronicalillnessthe idea of him growing without knowing how his condition is going to affect him is veryscary. What happens if he doesn’t take the medication? I just wish it was more information for parents on how to deal with all this worries! I also feel afraid about the moment when he leaves the doctors in the children hospital. Will I be able to trust any other doctor with him?” [Parent]
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Medication, medicine management, and person identity
a. Effect of medication upon identity |
It hasn’t affected the way i value myself; i still think the same of myself that i used to. My illness doesn’t really affect me apart from when i have to take my medication other than that i can’t feel it. I don’t think any less of myself because why should i???? Just because i have an illness...... I think that is just stupid. I am perfectly normal and i think that i am the same person i was before i got diagnosed. I think no less of myself. [Female, 13 years old]
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b. Side effects |
The medication I have can give me a weird reaction, and it makes me put weight on more easily, so I am used to being bullied by people calling me ‘chubby cheeks’ and other mean stuff, but my friends have always helped with bullies, by making me feel better, and getting me through harsh comments. [Female, 13 years old]
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The doctors want me to go on another medicine as well as although the embrel does make my joints feel better im still in alot of pain and can’t walk far, however i feel a bit nervous to go on it as it can have alot of side affects just like any medicine can. Therefore i have to think about what benefits me more and i know that this medicine will be helpful. [Female, 15 years old]
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Had to give the twice weekly injection - never a very nice time, it takes quite a while for this procedure as she is always very nervous that it will hurt, even though she has had more injections in her lifethan I have had in the whole of mine giving her her injection is never easy.[parent]
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c. Weighing up the benefits vs the disruption
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To be honest, I HATE taking medication everyday. I know that in the long run, it could help me with my symptoms, however it isn’t nice having to take them all the same. (Female, 16 years old)
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Taking medication is not the easiest thing in the world, it gets quite annoying knowing when to take it, but i don’t mind as long as it makes me better. [Male, 15 years old]
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‘…I know without it I could become ill again and I don’t want to end up in hospital again.’ [Female, 13 years old]
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d. Medication management |
To be honest, there aren’t that many positives when it comes to taking medication. I know that I have said this many times, but I feel that the main positive that has come from taking medication is having a sense of independence. I absolutely hate taking medication, but I cannot deny that it has given me an insight of taking responsibility for things. (Female, 16 years old)
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I kind of enjoy being in charge of my medication because sometimes I feel like a pharmacist??? [Female, 13 years old]
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Now I’m kinda like an expert on medication i know all the doses and names of my medications. [Female, 13 years old]
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Do i get enough help from my friends and family??? Yes i do everyone helps me in every way they can although i don’t need a lot of help. My friends don’t really need to help however they do sometimes ask have you had your medication? I am in charge of my medication therefore i am responsible for it. My mother helps by getting my prescription and collecting the medication from the chemist as i am not aloud because i am to young. [Female, 13 years old]
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I feel really pleased that my daughter has taken full responsibility for taking her medication, there have only been a few times when she has forgotten to take it [parent}
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The thought of our son been in control of the medication is a very frightening thought. As parents we know that the moment will have to arrive so he becomes responsible of his well being and independent but never the less still a worry because when you are in control your mind is at rest that you are doing it right but when you have to trustsome else with the medication becomes another thing for your head to worry about!!! [parent]
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Arthritis, medication use and public identity
a. Societal Attitudes
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People think that arthritis is for old people, which is not true quite sad to be honest when they compare you to old people [Female, 15 years old]
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I often find that explaining to people what arthritis is and why you go to hospitals alot, it gets tiring and annoying especially when they end it with comments like ‘my nan has that’ or whatever. Yes your nan may have it but others can get it too! I am however lucky to have my boyfriend as he too is familiar with hospitals and i can totally rely on him to carry me when im in pain.. Result! :)[Female, 15 years old]
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b. Normality through limiting disclosure
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It doesn’t really affect me because i don’t really tell people about my illness because i don’t want them to treat me differently. I think that people do treat you differently when they find out because they don’t no about the illness. I don’t like that because i prefer it when people take no notice and they shouldn’t because i may have an illness but that doesn’t make me any different from everyone else. However my friends take no notice of my illness and are just glad that i am well now. [Female, 13 years old]
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applied for college last night and there was a section about illnesses, had to describe my arthritis, sometimes school does not understand, like on Tuesday we had assembly and the chairs in the rows are really close together, it hurts my legs to keep them in that position for all that time, mom keeps on telling me to tell them but I feel awkard about it, hopefully college will be different. [Female, 15 years old]
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c. Social Networks
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Cannot talk to my friends about it [methotrexate] as they would not understand so me and mom discuss it and she assures me all will be ok. [Female, 15 years old]
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I have a lot of caring friends who help with many things in and out of school. They all understand everything i have to put up with and i never have to worry about going out and not being able to walk after a period of time as i know that if i need to rest they will sit with me until i’m ready to get going again. My friends never hesitate to help me out when i’m struggling, e.g if i’m walking home from school and i have lots of bags to carry, they always offer to give me a hand and help me out. [Female, 15 years old]
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ive got a confirmation meeting tonight and i think its lovely going to church and finish off my sacrament. Its lovely what ever youve got like arthritus, asma or anything else its lovely to know your apart of something and its lovely i cant wait! [Female, 13 years old]
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I do get very fustrated with it all because of how active i used to be and now i struggle to do most things, and I know teachers and friends understand but i dont think they realise the constantness of it all, that when i wake up i need to check if i can move properly today and i dont think my parents realise either because its always there so theyve just learnt to ignore it because its constantly there and i do accept that ive got it [Female, 15 years old]
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Discussion
• Provision of permissive environments in which to explore medication use with young people in the context of their everyday lives. | |
• Effective medicine management strategies which explore young people’s support needs across a range of social contexts | |
• Provision of opportunities for young people to make care plans that acknowledge their desires for self- and socially- referenced normality and which include reference to their goals and aspirations. | |
• Enhance young people’s understanding of how self-care activities can facilitate participation in their valued activities and how symptoms and side-effects that threaten identity could be minimised or managed. | |
• Enhance young people’s understanding of how symptoms and side-effects that threaten identity could be minimised or managed. | |
• Skills training for young people which will enable them to negotiate the social situations that they are likely to encounter eg opportunities to develop and practice positive disclosure skills |