A terminally ill child is a child who has no expectation of cure from his or her disease or illness, but who requires as much care and comfort as can be provided. Knowing what a dying child understands about his or her condition, as well as fears, feelings, emotions, and physical changes that occur, may help family manage the final process better.

Child with oxygen mask

The emotional, physical, and spiritual impact a dying child has on a family and community cannot be measured. Understanding how children at different ages and developmental levels view death and dying may help to alleviate many of the fears and uncertainties associated with this process.

It is a natural response for parents, relatives, and friends to protect a dying child from the impact of a diagnosis. What and how much to tell a child depends on many variables, including culture and ethnic background, the family structure and available support, and the individual characteristics of the child and family.

However, children at an amazingly young age are aware of the seriousness of their condition by the emotions and actions of those around them. Anxiety and fear can be caused by a child's perception that he or she is being denied the truth about a situation. Children detect inconsistency in information and avoidance of questions they ask. Often a child's imagination can create a much worse scenario than what may already be occurring. Terminally ill children, now more than ever, need love, support, and honesty from their family and friends.

The purpose of this module is to help family, friends, health care providers, and the terminally ill child work through the fear and anxiety associated with death and dying by providing information about this process and what to expect.

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