The diagnosis of a life threatening or terminal illness in a child is a life changing event – not just for the sick child but for the whole family. A family’s life is turned upside down and all family members have to learn a new role and new way of living. Often support is made readily available to the sick child and his or her parents, however brothers and sisters can be forgotten in the whirlwind of the new life and, at times, not enough attention is given to the needs of siblings.
The lives of brothers and sisters can be significantly impacted when a sibling is seriously ill – they can find that their lives are constantly interrupted by the need for their sibling to attend hospital and often face periods of separation from their sibling and parents particularly during long hospital admissions. They can also struggle with a myriad of emotions – guilt that they are healthy when their sibling is ill, anger at the disruption to their life and jealousy at the attention that their sibling is receiving. They can also be scared about the future and the outlook for their sibling. There are also positive impacts and some children will identify an increase in their resilience and independence as a result of their siblings illness and a sense that ‘they can cope with whatever life brings’.
How best can we support siblings in this situation? Children need information about the situation to help them come to terms with the changes and to help them understand. The main areas of information can be split into four main categories:
Cause – what caused my sibling’s illness – this often masks the unasked question – was it something that I did/didn’t do?
Catch - can I catch whatever it is from my sibling?
Care – who is going to look after me (and my sibling) particularly if my parents are in hospital
Cope – how will we, as a family, cope with this?
Siblings may also need independent support as they come to terms with the changes in their family life – they may find it difficult to talk about their feelings with their parents as they know the pressure that their parents are coping with and do not wish to add to it. Children have identified the following as things they would like their parents to know:
- I have a right to my own life
- I need you to acknowledge my concerns
- I want the chance to see my friends
- I need information to help me cope
- Please communicate with me
- I want time just with you
- Please celebrate my achievements as well
As professionals, we are ideally placed to help parents to help their children and to offer the social support that families need to cope with the added pressures of caring for a seriously ill child. It is important to remember however that we should expect typical sibling behaviour from typically developing siblings and coping with their sibling’s illness will not remove the normal emotions that children experience. As one sibling said to me “the hardest thing is the obligation to be nice to her all the time!” Perhaps the greatest help we can be is allowing them to be themselves at times!
Anne Harris, Director of Care at Rainbow Trust