Arthritis (young people)
Family
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.
Elly never liked talking to doctors when she was younger so her mum, Teresa, spoke on her behalf.
Elly never liked talking to doctors when she was younger so her mum, Teresa, spoke on her behalf.
Paul wants the doctor to speak directly to his daughter, Elizabeth. He sits further back and only asks questions at the end of the consultation.
Paul wants the doctor to speak directly to his daughter, Elizabeth. He sits further back and only asks questions at the end of the consultation.
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’).
Mary was 'methodical' when it came to her daughter's medications. She wrote down when her daughter needed medication so she didn't miss a dose or give her too much.
Mary was 'methodical' when it came to her daughter's medications. She wrote down when her daughter needed medication so she didn't miss a dose or give her too much.
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 often missed her medications and eye drops. Her dad gave her money for each drop and tablet and she now takes them all.
Gemma often missed her medications and eye drops. Her dad gave her money for each drop and tablet and she now takes them all.
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’).
Debbie and her husband help Chantelle get in and out of the bath and with getting dressed. They used to get embarrassed by it but have now gotten used to it.
Debbie and her husband help Chantelle get in and out of the bath and with getting dressed. They used to get embarrassed by it but have now gotten used to it.
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.
Emotional support
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's parents encourage her to be optimistic about the future and not see her arthritis as all 'doom and gloom.'
Jazmin's parents encourage her to be optimistic about the future and not see her arthritis as all 'doom and gloom.'
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, dating, 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.
Tina talks to other parents who have children with arthritis. It's good to have somebody who is in a similar situation.
Tina talks to other parents who have children with arthritis. It's good to have somebody who is in a similar situation.
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 Z's brother kept her company when she was stuck in bed or at the hospital. He's a 'protective' brother who struggles to accept Charlotte's arthritis.
Charlotte Z's brother kept her company when she was stuck in bed or at the hospital. He's a 'protective' brother who struggles to accept Charlotte's arthritis.
Kyrun's older brother lives away from home and forgets how much arthritis affects Kyrun. His younger brothers give him hugs and kisses and pass him the remote if he can't move.
Kyrun's older brother lives away from home and forgets how much arthritis affects Kyrun. His younger brothers give him hugs and kisses and pass him the remote if he can't move.
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.
Tina feels parents should be educated more about arthritis in young people. She felt that parents find it harder to accept the diagnosis than young people.
Tina feels parents should be educated more about arthritis in young people. She felt that parents find it harder to accept the diagnosis than young people.
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”.
Last reviewed: November 2018.
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