Care of the dying child

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Children at different developmental stages differ in their understanding of death. They gradually acquire components of the death concept; between 9 and 11 years of age, most children have reached a full understanding, acknowledging that it is permanent, inevitable, and universal. However, experience of serious illness and death interacts with the stage of understanding, so that children aged 5 or younger may have a more mature understanding and exhibit symptoms of anxiety about death. There is evidence that even young children with terminal illness are aware that they are dying, although they may not tell anyone that they know. (34

Parents (and professionals) often find it difficult to talk about death with children. However, this is likely to interfere with coping for the whole family. Families that have an open pattern of communication do better psychologically.(34) Mental health professionals may have a role in facilitating this discourse, promoting parent's confidence and competence in communicating with their children. This will help the whole family to begin the process of mourning.

Children need information, reassurance, an opportunity to express their feelings, and adults with whom they can do so. As children lack the vocabulary of adults they may often exhibit their distress by behavioural changes, for example bedwetting, difficulty sleeping, and school refusal. Children and their siblings faced with death need clear, simple, and truthful explanations. They should not be pushed to talk nor frightened with excessive medical detail. (,35>

Dying and grieving lead to a whole range of distressing feelings. This is part of a normal process, and mental health professionals can help their colleagues and families to acknowledge that this upset is acceptable.

Bereaved children frequently model their grief experience on what they perceive as being acceptable in the family, and an overt denial of upset by parents may lead to psychological difficulties in the child. The issue of whether to involve siblings after the death of the child in funerals or graveside visits often arises. In general, if children are prepared for what to expect, involvement can be helpful in enabling them to acknowledge that a change has taken place and that other people are feeling as sad as they are/34

Mothers are involved in nursing and caring for their dying children. They report an excess of depression, problems of helplessness, and a fear of being unable to cope with the child dying. Parents may feel that they can never fully recover from the loss of a child. Fathers tend to report more difficulties with feeling left out of the ill child's life and then with worry about their spouse being too preoccupied with the dead child. The effects of a child's death on family life can be traced even years after the death/34 Formal follow-up after bereavement may help to identify those families and individuals experiencing psychological reactions that may benefit from more intensive support.

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