`The family programme isn't very well known but it's an essential part of the Barretstown programme - there's no more important part because the benefits for the families are enormous and long-term," says Terry Dignan, programme director at Barretstown Gang Camp.
"The whole issue of illness in a family has huge ramifications for families. It changes the family dynamic which has built up over the years to the extent that they will never be the same again. The relationship between the parents suffers and changes, the relationships between the parents and siblings changes, and the relationship between the parents and the child who is ill changes.
"There's a huge negative impact on the family. We see it particularly with the siblings, who suffer enormously. When the child becomes ill, the focus of the parents is almost entirely on that child, naturally enough and understandably, but this means that the siblings lose a lot of the attention that they had before from their parents. "At the same time, there's extra responsibility placed on the children because the parents cannot continue doing the things for them that they did before. They have to grow up fast and take on responsibilities beyond their years. They themselves have to cope with the fact their brother or sister is seriously ill and may die, which is very hard for a child to understand. "It brings up a lot of issues, especially anger and guilt; anger at the brother or sister who is getting all the parents' attention to the detriment of themselves, and guilt that the sibling is ill and not them. This anger and guilt cause all sorts of behaviour problems which cannot be addressed because the parents are not focused on them. "The professionals are realising that for many, many years siblings have been the forgotten group. Everyone has thought about helping the sick child and the child's parents. No one has ever thought to sympathise with the siblings.
"How do we help them deal with it at Barretstown? We essentially don't. We don't have qualified counsellors so there's only so much we can do. What we can offer the siblings of sick children is attention, which they have lacked. Many do show attention-seeking behaviour. And we can try to give them a bigger picture of what's happening. "Essentially, we're giving them space, taking them out of the environment they've been in and giving a safe and secure environment for the whole family, which gives parents a chance to focus some attention back on siblings. It's a chance for the whole family to come together and have a laugh and enjoy each other because everything is looked after from the point of view of their needs. There's nothing hanging over them and no need to look at the clock. For some, it's the first time they've had a break in many years."