Brothers and sisters

Introduction

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:-

low self esteem,
social withdrawal,
jealousy and guilt,
academic under-achievement,
behaviour problems ( like attention- seeking behaviour),
anxiety,
increased irritability,
and feeling neglected in comparison with child who is ill.

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.’

Positive impact upon brothers and sisters

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'.

Playing together

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.’

Relationship between healthy sibling and child with arthritis

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:

[1] Davis Hilton (1993) Counselling Parents of Children with Chronic Illness or Disability. British Psychological Society: Leicester
[2] Eiser Christine (1993) Growing up with a Chronic Disease: The impact on children and their families. Jessica Kingsley: London