The brothers and sisters of sick or disabled children have their own unique needs. Sarah Barrell explains how best to support them and their families
Siblings - why do we hear that word spoken so often with anxiety, frustration or confusion? The brothers and sisters of sick or disabled children were once few and far between, but with constant developments in medical and nursing technology the number of sick children has increased and so, therefore, has the number of brothers and sisters.
These children, who have considerable needs of their own, are a cause for concern, and staff in childcare, hospital and educational settings often find it difficult to know how to cope.
Neglected needs
It is a tragic fact that although siblings' needs were recognised a long time ago, research and long-standing support programmes have been limited. Duncan Guthrie, founder of the organisation Action Research (formerly Action for the Crippled Child), was the father of two girls, one of whom had polio. The published findings of his research in 1952 suggested that, as he had suspected, illness within a family presented serious, previously unrecognised issues for unaffected children.
Since then, sibling awareness has been such a low priority that even some of those wanting to do research have been deterred, unable to find funding or a publisher to assist them. Without research findings, information and understanding is limited and the training people need to help them assist children has not developed.
Today, several initiatives are looking at how best to promote the work that is in place and to develop further services for siblings.
Coping in nursery
Siblings are not only those who have brothers or sisters with a serious condition. They include children in any family which has a member with special needs. How that special need is handled will have a significant impact on how the sibling copes, both in the long and short term.
Simon, aged three, had become a big brother over the Christmas break. On the first day after the holidays his father brought him to nursery. Instead of the bright and cheerful little boy staff expected, Simon entered the room silent and sombre. His baby sister had been taken to the special care baby unit immediately after birth and her future was uncertain.
In another family Martin, aged four-and-a-half, had a sister, Sophie, who developed severe breathing difficulties. She was admitted to hospital on several occasions, which affected Martin's behaviour. His usual placid demeanour gradually changed and he became wild and tense.
It is not unusual for professionals to become anxious at the thought of addressing the needs of a child in such a situation, yet in many cases there is no need to be. The sibling of a sick child needs the same love and understanding as any vulnerable child.
Children struggle to put their feelings into words and need to be involved in activities they can use to express themselves. Their acts of expression also need to be tolerated as and when appropriate. By beating up a baby doll they express anger, and if they are engrossed and insist they want to continue this game in the sandpit, then that wish needs to be respected. Familiarity, fair boundaries, routine, friendship and permission to laugh - despite the severity of the situation - are all important parts of the process. If key workers respond to their natural feelings of caring for a vulnerable child, they will probably respond appropriately.
Unfortunately Simon's father was so overcome on that first morning that he could not speak to anyone and left, giving only the briefest details. Simon became more and more withdrawn. He could not play and spent his time sucking his thumb, sitting mainly on a beanbag his mum had sat on the week before.
Staff learned later that he knew little about the baby or how his mother was, and was left with his grandmother when his father visited the hospital. His father was a shy man and Simon's key worker did not know how to approach him.
Only after two weeks did Simon's obvious sadness stir the nursery head into finding the right moment to speak to him. The staff had lacked confidence because of the cause of his distress and their limited contact with Simon's parents. They gradually found ways to support him.
Nursery staff were able to handle Martin's situation rather differently. As his behaviour changed, his key worker gently approached his mother to show her some rather wild paintings Martin had done that week, casually commenting that they were unusual for him. They established that there was a problem and talked through ways to reduce his anxiety. To ensure continuity, they agreed on how to give him reassurance and explanations, and on better ways of communicating.
Supporting parents
Families usually spend a period of time in shock after the diagnosis of a sick child and this can paralyse parents emotionally for a long time. They will benefit from your patience and understanding.
- Sick and disabled children have needs that can be extremely time- consuming. This leaves less time for the parenting of unaffected children.
- Relationships in these families tend to be strained. Parents often have to sacrifice a great deal to keep the family afloat. This can cause a lot of resentment that is often not voiced.
- Spouses and partners often find it difficult to support or be honest with each other. They also don't want to add to each other's pain by burdening their spouse or partner with their own hurt.
- Most parents do not get enough sleep, time to themselves, time with each other, support, respite, information or fun.
The siblings of sick or disabled children tend to show the following characteristics:
- Maturity beyond their years
- Even very young children can feel guilty or responsible for causing the illness or disability
- Likely to be unusually good, tolerant and caring for their age
- Miss out on family things and resent not being 'normal'
- Do not get the same amount of parenting they would if their sibling was fit and healthy
- Often reflect the seriousness of their lives and become isolated, as do their parents
- Find peer groups hard to mix with - this becomes increasingly difficult as they get older
- Lone siblings and siblings with sick older brothers or sisters are even more at risk of missing out on normality.
What you can do
- Give parents time to tell you their story in their own way (they may need to tell you about the sick child first). Get together to plan how to cope with any problems a week at a time until you have established a pattern or the difficulty has been resolved.
- Begin a communication book for you both to write in to keep each other informed.
- Make 'family books' with all the children. Use personal photographs and drawings, and allow all the children to talk more about their families.
- Keep the child's routine very familiar and present only simple choices. Expect the unexpected.
- Make your team aware of the situation if the parents give their consent and establish clear guidelines regarding discipline and boundaries. Institute a confidentiality policy if necessary.
Your needs
An interest in siblings often stems from something in our past that triggers off elevated levels of empathy for certain people, but the source of this may not always be apparent. As with any emotive subject, it is wise to keep a professional distance from families in such circumstances, no matter how strongly you feel you want to help. Parents and children need you to be emotionally strong, and the more you become involved the harder that will be. If you do find it difficult to switch off, find some support and ways of withdrawing from the situation. NW
Sarah Barrell has worked with siblings for 15 years and wrote Brothers and Sisters - how to help the siblings of sick and disabled children, a booklet for families. It costs 8.50 (inc p&p). She would welcome comments and enquiries from anyone concerned about sibling issues. Please e-mail her at geoffandsarah.barrell@virgin.net or telephone 01865 882002.
Further information
- Contact a family: charity giving details on where to find support and advice for any medical condition - includes details on siblings www.cafamily.org.uk
- Sibs, PO Box 50, York YO1 9ZX: for the brothers and sisters of people with special needs. Contact Monica McCaffrey for details on training to run sibling groups.
- The SibNet and SibKids Listservs www.chmc.org/department/sibsupp - e-mail type bulletin board for siblings of all ages
