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When a child develops arthritis brothers and sisters (together referred to as siblings), are affected too. The amount they are affected will depend upon factors within the family as well as factors outside the family. Examples of important factors within the family include the severity of the illness, ages of the children involved, their personalities, the parents' involvement in prescribed treatments, what information the parents seek out, and the way in which family members communicate with each other. Outside factors include the availability of help from grandparents and friends, work pressures (workloads, threat of redundancy) support or otherwise from schools and community services, and financial worries or resources, and how effective support is from healthcare professionals.
From the little research there is about siblings of children with any disability or long-term illness [1],[2], we know that there are common themes to how many siblings react, and these include:-
Brothers and sisters live with the consequences of childhood arthritis, but their needs are often unrecognised by professionals. In the Brighton research, families described how siblings had to make do with less of their parents' time, and learnt to live in an atmosphere of concern for a sick sibling.
Parents strive to meet the needs of all their children but the family's schedule and choices can become driven by the unpredictable and fluctuating nature of arthritis, and the treatment needs of the child with arthritis. In the Brighton research, all the parents who were interviewed, and most of those answering the questionnaire, reported that one of their greatest concerns was that they were failing to fully meet the needs of siblings because the needs of the ill child were so absorbing of time, energy and emotion. A father said 'sometimes we don't spend more time with her because we are busy with our sick child.' Another typical comment was 'they are wonderful with her but often resent the extra attention she gets.' One parent said 'I think her arthritis affects the family quite a lot because we cannot do as much as ordinary families do and we have to look after her a lot more that a normal healthy person.'
Parents and children reported many ordinary examples of how they adapted to the situation. One parent said 'her older sister thinks she gets away with everything that means work', while another said the older sibling was 'aware of [having to avoid] accidental knocks, having to wait longer for things, doing little extra jobs to help with her care.'
Many families have to divide their activities, so that one parent accompanied the fit child to physically stretching activities, and the other parent (or available adult) did more sedate activities with the child with arthritis. For example a mother reported 'holidays and days out are restricted i.e. he wants to go on tube trains and climb mountains - tends to split the family up.'
In most families, it was reported that the siblings, where old enough, became understanding and supportive of the child with arthritis, but also were aware of how the situation made their families different from other families. Parents' reported that siblings learnt that people's abilities and needs were different and that the child who often felt unwell needed understanding and support. Parents said that siblings helped with household tasks and some seemed to become more independent earlier than their peers. One mother wrote: 'my fifteen and eight year old children have learnt a lot from his condition. I don't think they have lost out - only gained in experiencing life is not all good. Understanding and patience go a long way to making us good adults.' Older brothers and sisters in particular seemed to develop a caring and supportive attitude to the child with arthritis. A mother said 'his older brother is very helpful and caring. He seems to cope well'.
An area of concern and sometimes sadness for parents was how the children changed how they played together. Parents observed that 'our son won't play with her. He has to play on his own or adapt play for her. He worries about her.' Another mother wrote 'His sister is much more robust and hurts him occasionally when playing.' Other younger children did not understand their sibling's illness: 'her sister, being younger, does not understand why she won't play or why she feels too ill to communicate.'
Many families felt that their well children missed out on playing with other well children. For example a mother said 'I feel sad for her and her brother that they don't get invited to some parties their friends have because they're being held in areas which aren't suitable for her.'
In the Brighton research, some older brothers and sisters wrote diaries about their feelings about living with arthritis. In these diaries, there is evidence that siblings saw and heard how other children treated the child with arthritis at school. They witnessed the cruelty that some children visit on children at school who seemed different. In all cases, the siblings and the children with arthritis had not told their parents about these playground incidents, but the events seemed to encourage a closeness and empathy between siblings.
Here are a few of their diary entries:
Siblings were clearly affected by watching their sibling endure the exercise routine. One sister remembered that she hated hearing her sister cry when she was doing the exercises, and would try to disappear. She wrote 'I'd go away for a few hours so that I couldn't hear her. I was very uncomfortable. It sounded like she was being murdered'.
Younger siblings would sometimes join in doing the easier exercises, but often lost interest after a little while. They could leave, but the child with arthritis had to continue.
Sometimes siblings (and possibly the parents) did not understand some aspects of the treatment for arthritis. For example, a few months earlier one young girl with arthritis had been prescribed a medicine called methotrexate, which could cause a well-recognised side effect of mood swings. Her parents said that her behaviour had changed in recent weeks and her moods had become very volatile. She wrote about her sister in her diary:
Her older sister did not know how to deal with this behaviour and tended to argue with her, and generally ceased to play with her. In this family, both the parents and children were not informed about the possible impact of this medicine, and were left ill-equipped to deal with the impact of it. They did not seek help because they believed their child's new behaviour was just a 'typical pre-teenager'. Her new behaviour could have been caused by the medicine, but it may not have been: the impact however was that the relationship between the girls became seriously challenged, and they received no information or assistance to cope with it.
Jasmine, whose sister has arthritis, advised siblings to spend more time with friends so that they can escape from the tense atmosphere of the home. She also wrote "I need to be the centre of things sometimes and not just part of the background. I try to support Mum by doing things around the house, but sometimes I feel unappreciated and like I'm an ignored pillar that is straining under the weight of the family's emotions and my own. Mum does try to include me and talks to me a lot about how I'm feeling which helps a lot."
If the children's behaviour changes, or if a difficulty between siblings develops ask the healthcare practitioner for help and advice. They may refer you to someone with the proper skills and experience to help you and your family deal with your situation.