Chronic physical illnesses

Children with a long-lasting physical illness are twice as likely to suffer from emotional problems or disturbed behaviour. This is especially true of physical illnesses that involve the brain, such as epilepsy and cerebral palsy.

Serious illness or disability can cause a lot of work and stress for everyone in the family, especially the parents. Children who are ill have many more stressful experiences than children without an illness. Most children will, at some time, get upset by this. Sometimes, the upset feelings and behaviour can go on and on. If they do, this can add to the child's health problems by making their life even more difficult.

Following the diagnosis of a potentially serious or long-term illness, most parents and children go through a process of coming to terms with it.

The affected child might have fewer opportunities to learn everyday skills, and to develop their
interests and hobbies. Educational problems are also common:

• Your child might have to miss a lot of school and have particular difficulties with learning.
• Be sure to be in touch with your child's teacher on a regular basis. Your child might need extra help at school.
• Your child might see themselves as different from other children, and they hate this.
• Some children may become depressed (see leaflet 34 on depression in children and young people).
• Some children may be vulnerable to bullying (see leaflet 18 on the emotional cost of bullying).

Brothers and sisters sometimes feel that they are being neglected. They may feel embarrassed by their brother or sister. They may feel responsible for them. They can miss out on school or their social life, get bullied or lose friendships. It is important to consider how all members of the family are challenged and affected when a child has a long lasting illness.

It's very important to remember that although long-lasting illness does make things very difficult, most children and their families cope well. It is only a minority who experience problems.

Making sure that there is enough help and support is very important. In addition to support from family and friends, try:

• Contact a Family (see above for contact details)
• your general practitioner
• voluntary support groups
• social Services
• school
• health visitor
• school nurse.

"When the doctor – Professor James it was – told my Mum I had diabetes, I couldn’t understand why she got so upset. It wasn’t going to kill me or anything – not like a girl in our school who had cancer...then I didn’t understand how much I’d have to take care of what I ate...or at least I’d have to work out how much Insulin I had to take...I couldn’t just relax.

Then there were the injections and the ‘pen’ for testing my blood sugar. They don’t exactly hurt, but it’s a bit like being a prisoner...having to do it all the time. Then sometimes I get fed up and think “why should I have to do it...and why did it happen to me anyway...The doctors say it wasn’t anything I did or even my Mum or Dad did, but I can’t often believe it must have been someone’s fault.

...and if I do play about with it a bit...I know it really winds my Mum up...I know I sometimes do it on purpose when she been winding me up. Dad just gets angry when I do it, and sometimes it leads to arguments...I mean arguments between them. But then they sort of get together and gang up on me. Sometimes I even thought I could get them to stop arguing by playing around with my ‘B.M’s (Blood sugar measurements), and a few times it worked. Funny really...I felt I was the like winner...I mean that I was in charge when that happened.

The hospital told me I might have problems if I didn’t try to get better control of my B.Ms, and one creepy young doctor wanted to take me up to the adult ward to see the people who’d lost toes or couldn’t see properly. No way I said.

Still I did later talk to the diabetes nurse. She was great, but after I talked to her I sort of lost the fun out of mucking about with the B.Ms."

• Contact a Family: for families with disabled children. 209-211 City Road, London EC1V 1JN; tel. 020 7608 8700; helpline 0808 808 3555; textphone 0808 808 3556; email: helpline@cafamily.org.uk
• The Back-Up Trust: A national charity supporting people paralysed through spinal cord injury. The Business Village, Broomhill Road, Wandsworth, London SW18 4JP; tel. 020 8875 1805
• YoungMinds provides information and advice on child mental health issues. 102-108 Clerkenwell Road, London EC1M 5SA; Parents' Information Service 0800 018 2138

References

• Rutter’s Child and Adolescent Psychiatry, Fifth Edition (2008). Publisher: Wiley-Blackwell.
• Glazebrook C, Hollis C, Heussler H, Goodman R, &  Coates L.(2003) Detecting emotional and behavioural  problems in paediatric clinics. Child: Care, Health & Development 29, 141-149.
• Hysing M, Elgen I, Gillberg G, Lie SA, Lundervold AJ (2007) Chronic physical illness and mental health in children. Results from a large-scale population study.  Journal of Child Psychology and Psychiatry 48 (8), 785–792.

Credits

Revised by the Royal College of Psychiatrists’ Child and Family Public Education Editorial Board.

Series Editor: Dr Vasu Balaguru

With grateful thanks to Dr Fareeha Amber Sadiq.