In this section young people and parents talk about how arthritis affected family life, how they coped, and the support available for parents and family members with arthritis.
Involvement in treatment
Families could be very important to young people’s medical treatment. Some people who talked to us said their parents had pushed for a diagnosis before doctors knew what the problem was (see more ‘Routes to diagnosis’). After people were diagnosed, parents arranged and attended hospital appointments with their children, drove them to the hospital, discussed treatments with doctors and nurses, and asked for help and advice about what to do during a flare up (see more ‘Clinics and monitoring arthritis’).
Some young people didn’t have the confidence to speak to doctors and nurses so relied on parents, but others got frustrated when doctors spoke more to their parents.
She didn’t like answering questions when she was younger, so...
she’d be quiet?
So you’d have to speak for her?
Yeah. She would never, yeah she would never, you’d sit there and think, “I can’t ask her,” I don’t know how, ‘cos they always ask the children, they always ask them the questions, “How long does it take you in the morning until you’re not stiff anymore?” I can’t answer that question, I don’t know, but she would never really answer it, or she would always just, or they’d say, “How are you?” And she would always say, “I’m fine.” “It’s fine.” And the, ‘cos she didn’t like answering, she, I think she’s, well she’s better now but I, I imagine that’s not atypical of children, of people anyway. But they just don’t want to make a big fuss actually. I don’t know; it must be very hard for the doctors.
It’s quite hard to articulate as well for children.
“What kind of pain is it?” “It just hurts.”
“Well it just hurts.” “Well what do you mean on a scale of 1 to?” “Well what do you mean? It just hurts.” And, and you kind of forget, if it’s not hurting then you deliberately draw a veil over things don’t you? ‘Cos it might go away then.
Well I make a point. I sit just off of the eye contact, so I, it’s a triangular, you know and you’re right, I mean he didn’t I think modern training and modern views, that’s certainly when they get to 12 or 11 or 12 they certainly do start talking direct and it’s, it’s only at the end of the interview or consultation that I’d, I’d ask the extra questions that perhaps a parent wants to know. And you know long term effects or drugs or whatever. And but it that can happen, yeah, but I’ve always you know it’s like disabled persons on a different level in a wheelchair, you know you step aside and hopefully the other person will engage direct. Yeah.
The young people we spoke to said it was usually their mums who went to the hospital with them, but sometimes parents shared the responsibility and took turns. Jessica was worried that her parents would lose their jobs because they had to take so much time off work. Her dad set up his own shop so he could take as much time off as he needed (see more ‘Employment and volunteering’). Rebecca said her parents found it harder to get time off work when she was older. When people reached a certain age they started going to clinics by themselves. Parents sometimes reminded young people to go to the hospital.
Parents often had a big role in helping young people take their medications. They ordered the medicines and made sure they were taken on time. To help people remember to take their medicines, parents sometimes put their tablets in pots and monitored what was taken by keeping a written record. Stacey wrote down which leg her son had been injected in so he didn’t have two injections in a row in the same leg (see ‘DMARDs’).
I'm quite methodical in stuff like that. I always had, I'd just wrote everything down when it was to be administered, what times it was to be given, the amounts and everything and that was not just for me because it was; we would, Jessica was ten before my husband and I actually went away for a night or away somewhere without; because we always felt like it was, it was hard enough on us with that responsibility to give that responsibility again to somebody else was even harder. So you just get into a routine of making sure you wrote everything down, you knew when it was to be given so again it just, you get into a habit and it just becomes a habit and you, you then learn which; like I learnt the, the bit about paracetamol and Neurofen about you can give it every three hourly's because she was in so much pain all the time that it was a case of, 'What the hell can you give her that's going to take this pain away a bit faster?' and the having talked to the nurses and they said we, "Have you done this bit where you can do it in-between?" So, you know, that you just learned by asking the right questions. It's all by experience but I mean you just write that down. I did it with the when my mum got diagnosed with cancer. We all, my mum was on so much medication we did exactly the same thing – put days, you know, what times of the day and tick them, then add a tick box when it was given and whatnot so you made sure that you weren't either duplicating it or somebody else wasn't coming along behind you and giving her the same medicine. We don't have the same charts and things like they do at the, the hospital.
Parents could provide comfort when their children went to the hospital for uncomfortable treatments, such as joint injections (see ‘Steroids’), and kept their children company during infusions (see ‘Biological therapies’). When people needed injections at home parents could be taught how to use a syringe. Some parents were OK with injecting their children but others “hated” it and were scared of hurting their son or daughter.
Occasionally a brother or sister would do the injection. Parents also helped people to apply creams into sore areas. Sometimes parents had a hard time giving their children medication because they refused to take it. Parents had to run around the house chasing their child, or offer them incentives to take medication.
Gemma is a school student and lives at home with her parents. She is white British.
I’m absolutely terrible with my eye drops. I hated them. I always got told to put them in in the morning but my argument was always, “I always have make up on so I can’t.” But Dad was like; Dad stood in the kitchen and went, “How many tablets do you take a day?” I was like, “About ten to twelve.” So like, “10p a tablet, 10p an eye drop. If you do all that £2.00 a week.” I was like, “Okay. Sorted.” And it actually works ‘‘cos I have been doing them.
It has made a difference?
What made you miss the tablets?
Tablets because I forgot about them. It wasn’t that I couldn’t do them or I wouldn’t do them, it was simply the fact that I forgot about them.
So to keep on top of it, was it an issue? Why has that changed then?
They get laid out for me.
Do they? Do you have like pots? How do you manage it?
When Mum comes to do breakfast in the morning she’ll lay out all of my tablets for me, and then at night after my meal, like before my meal’s done, when I’m setting the table I put one on top of my pot, ‘‘cos then I know I have to take that after.
Okay is that when you take all of your tablets, morning and...?
Morning and after my dinner.
Okay, nothing in the afternoon? Nothing at lunchtime or anything like that?
No, just paracetamol if I need it.
Okay. And with the eye drops, what put you off them?
I don’t know. It was just the fact that something was going in my eye and I didn’t really like it.
Did it sting?
Yeah blurry for like twenty seconds or something.
And how often do you take them?
One eye drop in each eye every day.
Do you have problems with your eyes?
Yeah I’ve got Uveitis.
Personal care and physical support
Helping young people look after themselves and providing physical support was another way parents helped their children. They helped their children get in and out of the shower and bath, got them on and off toilets and helped with dressing. Some young people felt embarrassed about their parents helping them but others got used to it after a while. Parents also carried people up and down the stairs, cut up their food and opened cereal boxes and tins for them, drove them to places when they couldn’t walk far, and cleaned up if people were sick after taking medication. Stacey helped her son on and off the commode when he was in hospital. Parents also bought things like foam mattresses, stair lifts and walk in showers to make life easier at home for their children (see ‘Getting around, home adaptations and daily living’).
Yeah if she’s in pain with her back there’s a massage technique that the physio showed us what to do for her. So we can lightly massage her back to get that out of pain. There’s if Chantelle needs me to go and get things for her she’s got things like arm braces to sleep in, to keep her hands like in one place so it’s to stop less pain. There’s things like that I can put on for her. If she needs help in the night she’ll just shout, and then I have o go in the bedroom, give her medication, help her to get out of bed if she’s stiff, things like that we’re always there, but I mean I can’t do too much, I mean with her bathing and that I have to bathe her because obviously her Dad can’t do that but I’ve got numbness in my feet and hands through the diabetes and that, so there’s only a certain limit I can do. But like it’s what we normally do, Chantelle, sometimes if she has a bath she can’t get back up, so we have to empty the bath, stick a towel round her, then get her Dad to come in and help lift her up and stuff, because you know it’s her dignity at the end of the day as well, and being a girl it’s a lot different ‘cos I can’t help get her up. And things like that we’ll help with.
Most days she’s getting better but there are days when she does struggle. It’s like with buttons, she can’t do buttons so, and with me, with my hands and numbness getting things, like sometimes her Dad’ll have to come in. But it’s like, he’s there trying to do a button up for her, because he doesn’t want to look ‘cos he, and it’s you know, so I try my best to get them done up so far as I can and then he’ll finish them off and stuff. And like shoe laces, he’ll tie shoe laces for her and things like that.
Is that is that embarrassing or is it something you’ve got used to? How do people feel about it?
I think her Dad used to get embarrassed at the beginning because of being a girl and going in the bathroom and lifting her out, even though we stuck a towel round about, ‘cos we’d empty the bath and then put the towel round her, and stuff you know ‘cos he was all, ‘cos we had, I stick clips on them so it doesn’t fall off, ‘cos you know sometimes your towel, so I make sure there’s clips on there. And stuff like that, and it’s like, you know at first I think he was a bit embarrassed ‘cos of it being a girl, but now he’s got used to it and Chantelle just is oblivious to it all to be honest and that like, she’s just a typical child.
Parents sometimes knew that their children were having difficulties without them needing to ask for help. Charlotte X and her mum both have arthritis and try to help each other out.
Families could also be an important source of emotional support. They listened when people needed to talk, gave hugs and reassurance, and tried to cheer them up when they felt down.
Families could be “on the receiving end” if people felt frustrated, angry or upset. Often parents tried to be supportive whilst not trying to “molly coddle” their children because they wanted them to become more independent. Families could help by being positive.
Jazmin is a full-time university student. She is white and black Caribbean.
Just I don't know, it's just, I don't know just the emotional aspect of it and all of that and it obviously, my parents were just good at like fitting their like work around like the hospital appointments and everything so that was alright. And yeah obviously when my sister got older and she like knew more about my arthritis and everything and like we're really close now in like, like best friends now because like she's; like when I'm having a bad day she'll like, you know, like ask me, "Shall I bring up food or drink for you?" and everything like that and yeah and all that and we're just like, she'll like look out for me and everything and yeah it's just, that's the only impact really like emotionally really.
What about your parents?
They're very strong, very strong in how they've dealt with it with my whole life and it's really encouraging to know that they're optimistic towards it, it's like, if they think it's like doom and gloom and everything then obviously that would impact me like, I'd think that, that it's just like the end of the world like you just give up sort of thing but it's like good to know that they like see it you know, positively like helped me through it, sort of thing, you know and yeah. They kind of support me as well as each other even though they're divorced and everything but there's like, even now they're still great friends and they still help me and everything and step-dad now, he's great and everything towards it and everything. You know it's just like, "Jas you feeling alright?" and I'd say, "Oh I'm feeling fine," sort of thing even though he can see me limping. He'd be like, "You're not OK Jas, sit down," sort of thing and yeah it's just fine and everything.
People who no longer lived at home sometimes went back to their parents during a flare up. When Kerrie finished university she moved back to the same town where her parents lived so she had physical and emotional support close by.
Families could also need emotional support for themselves. Parents could feel “shocked”, “upset” and “worried” about arthritis. Some felt “angry”, “guilty” or “disappointed” with themselves if they thought they’d passed the condition on to their son or daughter. Sometimes parents felt helpless. Sheri said her “world collapsed overnight” when she heard that her daughter had arthritis. She had a history of clinical depression and this made her feel even worse. Young people sometimes said that it was tough to be diagnosed with arthritis but tougher for their parents. Families worried about their children’s future, particularly around issues like employment and pregnancy (see ‘Relationships, sex and pregnancy’ and ‘Employment and volunteering’). Some parents hid their feelings from their children so they didn’t upset them more.
The parents we spoke to hadn’t been offered support by the hospital, but they found different ways of coping. Sometimes mums and dads relied on each other for support. Nurses and teaching assistants also offered support by listening and answering questions. Parents had contacted charities like Arthritis Care and the Children’s Chronic Arthritis Association (CCAA) to talk to other parents for advice, but not everyone knew that such opportunities existed.
What is it specifically that's good about speaking to other parents?
Well I just have them, there's two people that…there's a young lad close by and I talk to his mum and there's another wee girl, not too far away either, she's eighteen nearly and it's good even to talk to her and her mum, you know, as well and just if anything happens it's nice to know you can talk to them. And just to…it's been nice though going to some of the support meetings as well, you know, the, we went there at Christmas time, we went to, there was a meal and a pantomime and it was nice talking to the kids there, the mums and dads too you know and it was good for Lucy to be able to talk to, to the wee ones around her age as well because when you go to the rheumatology department for your check-ups you're sort of in behind a curtain and you're not, you don't see anybody else till you leave, you know, you just go in and you hide behind a curtain for a while and then you leave again. Which is OK because, but you don't meet them so you don’t. But it is important to talk to parents that you know, to talk to, from a parent’s point of view you wouldn't get talking to parents either at any of your appointments you know. But that's it really.
One woman received counselling from a clinical psychologist for her depression but didn’t think it helped. Marie went to behavioural therapy because she was having panic attacks whenever she went to hospital with her son. The therapy helped her lots. Sometimes parents sat in their son or daughter’s counselling sessions and felt it had helped. Teresa used to let off steam by screaming in fields or shouting at football matches (see ‘Emotional challenges’ and ‘Coping with emotions’). Some parents also talked about the impact that their child’s arthritis could have on the relationship with their partner and hoped for more support and understanding around this.
Young people could become closer to family members who supported them. Emma felt that she grew closer to her mum but less so with her dad because he was away with work a lot.
Brothers and sisters
People also described the impact their arthritis had had on their siblings and sibling relationships. Brothers and sisters could provide physical and emotional support. They listened when people were upset, helped with injections, brought food and kept people company by spending time with them and watching DVDs. Kerrie was very close to her family and said that her parents and sisters got upset about the arthritis. Dan’s sister taught him what to say to people who were unkind to him at school.
Some of the people we talked to said that their brothers and sisters didn’t understand arthritis or struggled to accept that their sibling had it.
Charlotte is a student at college studying a BTEC in Forensic Sciences. She is white British.
He doesn’t like it. He doesn’t want me to be ill. I don’t think he’s accepted it. I think he’s in, I think he’s the one who’s found it hardest, like I was on, I think he’s, ‘cos obviously he’s in the Army and away, when I’m really ill he comes home and he came home and he, obviously I’m stuck in bed so he comes and sits with me and puts on a film.
When I was in hospital he came back from where he’s based and came to the hospital and brought me DVDs and food, and yeah. And I was on crutches at one point and he rang, he kept ringing me to find out if I was off them yet. And yeah, he’s quite, we’re quite close so, and he can be quite protective as well, so I think he finds it quite hard ‘cos I’m in pain and he can’t stop it. So I think he probably finds it the hardest out of the whole family. Like we were walking along and he was like, “Walk normally.” And, but yeah I think he just wants me to be normal. I don’t think he wants me to be ill, but yeah. Only one sibling can get the illness, so I took it for him so he should be thankful.
And you mentioned about the injections didn’t you, he didn’t want you to be on those?
Oh yeah I did an injection in front of him and he was like “Oh don’t do that.”
Age at interview:
Age at diagnosis:
Kyrun lives at home with his mum, stepdad and two brothers. He is a college student. He is white British.
Now and then because like my little brothers are so active, my older brother’s a paramedic, so he’s out all the time. He’s like, “I’ll come out let’s go swimming, go out play football, something like that.” It’s like, “Remember I’ve got a condition. I’ve had a hip, both my hips replaced; I’ve got to take it easy.” So and that causes tension because I feel like I’m like getting him upset because I have to keep reminding him, but it’s not his fault because he’s not at home, he’s like living away so he doesn’t, he’s not like with me 24/7 so, but yeah so.
Okay yeah I know you’ve got, is it two younger brothers?
How do they get on with the Arthritis?
They helped me a lot. I just used and abused them as in, ‘cos I couldn’t like bend over like to pick something off the floor so I’d drop my play station remote for example or I’ll say, “Come and get this for me,” but they were so sweet with me they knew like my hips were affected so they always like came to my side like when I was sat they always came up and gave me a hug and like they leant away from my hips, and after having the operation I had a really big like bandage around my leg and they were like, “Oh he’s got a special bandage,” and they used to always give it a kiss before they went to bed. So, yeah.
That’s very good of them. How old are they?
Two and four.
And they kind of understood certain things?
They understood that Ky was in pain and not to like annoy me because I will flip, as in, ‘cos I had such a short temper when I was, when I’m in pain so they knew like not to get me annoyed, but they knew not to like treat me differently sort of thing. Cos I was like able to move up like upper body so I used to play catch all the time and stuff like that, but then like let’s play football and it was, “Oh no, can’t,” so they, yeah they were fine, they were fine.
Siblings could get “frustrated” or “jealous” if they thought they weren’t getting enough attention or if they felt they weren’t treated fairly. For example, when Caitriona’s mum bought Caitriona more pill boxes her sister thought she was getting more presents. Cat’s parents bought her a car because she couldn’t walk far but they couldn’t afford to buy a car for any of their other children.
Sometimes younger siblings found it “annoying” when they had to travel to the hospital and spend time in waiting rooms whilst their brother or sister saw a doctor. They also didn’t like to see their brother or sister suffer with arthritis. Sometimes siblings stayed with friends or grandparents instead of going to the hospital. Jenna’s sister took her Nintendo DS to the hospital to keep her occupied or watched the hospital TV. Siblings could learn about arthritis by going to charity-run camps (see ‘Learning about arthritis’). Parents tried to make sure that they didn’t give one child more attention than another.
Information and knowledge
Some parents were knowledgeable about arthritis. They learned things by going on the internet, speaking to health professionals or other parents, or simply acquired lots of knowledge by caring for a child with arthritis for a long period of time. If parents had arthritis themselves they could offer information and advice to their children based on their own experiences.
However, people sometimes felt that there wasn’t enough information for families about arthritis. Parents found it frustrating when they couldn’t find answers to questions. Sometimes young people were the first in the family to get arthritis, but a few people said their grandparents also had arthritis. Families who didn’t know much about arthritis sometimes felt that they didn’t know what to do to help or even how to speak about it.
Well it's still going to be tough and I do think that a nurse or somebody very sympathetic would help you know, would definitely think somebody spending a bit of time with you even, you know, because it's very hard. The child will accept it much quicker than the parent because they just don't want to know, they just want to be the same as their friends and they'll just want to really take whatever it is that the doctor says they have to take and then they'll be better. So I don't even think the child, if it's a young child, needs to maybe be told all that much. I think the parents need to be educated on it so they do and I think it would; I think it just takes time, just the rheumatology department here is very good. It's taken me a while to realise that. They're very, very, very busy, they've not much time to you know, to talk to you really because they're so busy. There's a couple of really fantastic nurses up there that couldn't do enough for you and…but I suppose they don't have time to sit down and talk to you about it, you know.
Not everyone had the kind of emotional support available that they would have needed. Young people sometimes felt that family members didn’t know what to do and so avoided talking about arthritis. Parents who didn’t understand the condition could seem unsympathetic or do things that young people felt were inappropriate, such as making insensitive jokes or comments. One person said that her dad asked lots of questions about arthritis but didn’t get that “there’s a person inside the person with arthritis”.