Arthritis

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.
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’).
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.
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’).
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.
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.
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.
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.
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 August 2015.

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