Impact of a Terminal Illness Diagnosis on Children

How children view illness and dying varies depending on their age and developmental stage. The more you can understand about how your child feels the better equipped you are to help them deal with the impact of the information they receive.

Babies and infants have no concept of death but do react when separated from their parents or when they have to go through painful treatments. Maintaining their comfort levels and routine is the most vital part of caring for a baby or infant with a terminal illness.

Toddlers still have very little self awareness and so have little concept of death. However, they can become anxious when separated from their parents and will begin to sense the emotions of people around them. They may react negatively when they experience sadness or anger around them. They may not yet have developed speech or communication skills and are unlikely to understand the concept of time or loss.

Young children
Primary age children begin to understand that illness and death upset adults and are not happy experiences. However, their concept of the permanence of death isn’t well established. At this stage you should use clear language when talking about illness and death so your child does not become confused. At this age children can also become anxious that they are the cause of an illness and will need explanations (why, what, when?) and constant reassurance.

Older children
As children get older they often develop a morbid curiosity with death and start to understand that death is forever. They will often have lots of questions about the progress of the illness and eventual death and may seem quite unfazed by very honest answers. Much of the fear children develop at this stage is similar to adults, fear of the unknown and fear of separation.

At this age most children understand death is forever and they may have experienced death or illness within their own circle of family or friends. Their experiences and emotional maturity will influence how they deal with their own diagnosis and impending death.

Terminally ill teenagers often behave exactly like normal teenagers. This is a stage in life when young people test out their independence and begin to cut out their parents in favour of peers. Communication can be difficult to establish or maintain. They may be angry and moody - swinging between not caring and having fiercely defended opinions.

Teenagers often need to talk to their peers about what they experiencing and keeping life as normal as possible is important. The Teenage Cancer Trust is a very experienced organisation that can help.

At every stage your child needs to know that they are loved and supported. You need to provide avenues for your children to explore their feelings and express emotions before they die.

Organisations that can assist you are:
Winstons Wish - helping bereaved families and their children
Helen and Douglas House - hospice care for children and young adults