ICU-USA

General Comments

This section offers guidance for communication and interaction with children who have a loved one in an ICU. This information includes general guidelines that have proven useful. The suggestions should be modified as necessary to meet the specific needs of the child and circumstances surrounding a loved one's illness in the ICU.

Age specific guidelines are difficult. The information conveyed to a child needs to be appropriate for the child's maturity and personality. Therefore, it should be determined by the adult responsible for the child.

Should a child be told about a loved one in the ICU?

Yes. Children have the same wants and needs as adults when it comes to knowing what is happening with their mother, father, grandparent or close family member in the ICU. When a crisis or tragedy occurs within or close to a family, no amount of caution or secrecy can hide from the children that something threatening and important has occurred.

Most authorities recognize that trying to protect a child by withholding information is not in the child's best interest. Children possess strong observational skills. However, they do not possess the maturity to correctly interpret all of their observations.

Therefore, it is best to have a parent or close family member communicate with the child.

The patient's condition should be explained to the child so that the interpretation is not left up to the child's imagination. Provide an honest, accurate explanation with as much information as the parent or close family member believes to be appropriate. Medical terms with simple explanations should be provided.

The parent or close family member should also explain what the potential outcomes might be, to the best of their understanding. The child should have the opportunity to ask questions, which should be answered as honestly and directly as possible. Allowing the child to participate in a loved one's illness is critical to maintaining the child's trust in the family.

Should a child be allowed to visit a loved one in the ICU?

Visiting an ICU or even an ICU waiting room can be an overwhelming experience for an adult. Careful consideration should be given to whether or not it is appropriate for a child to visit the ICU waiting room or the patient in the ICU.

The first step is to provide appropriate information to the child regarding the loved one in the ICU. Subsequently, if the adult responsible for the child feels a visit would be appropriate and the child is capable of making the decision, the child should be given the opportunity to decide whether or not he/she wants to visit the loved one in the ICU.

If the child does not desire to visit the ICU waiting room or their loved one in the ICU, the child's decision should be honored. Remember, however, that the child needs ongoing communication about their loved one's condition and potential outcomes. Make sure the child's imagination is not leading them to inappropriate conclusions by having frequent conversations with the child.

If the child decides that they want to make the visit, the adult responsible for coordinating the visit should review and plan the following steps, which are further discussed below:

• Check with the medical staff prior to the visit
• Prepare the child for the visit
• Prepare the patient for the visit
• Remember the visit is for the child
• Plan a brief visit (5-10 minutes)
• After the visit
• What if the child does not want to visit?
• When is it better not to visit?


Check with the medical staff prior to the visit

It is always a good idea to discuss the visit with the ICU staff to make sure that it is safe for both the child and patient. Many ICU's have visiting policies pertaining to children. The ICU staff may have additional suggestions for you regarding the visit. Often children may want to meet the nurse or doctor caring for their loved one and this can be arranged.

Specifically determine whether or not the child can have physical contact with their loved one. You may also want to inquire if the alarm systems can be turned down or off during the visit, as these can be frightening to the child.

Prepare the child for the visit

Prior to visiting a loved one in an ICU, the child should have a reasonable understanding of what he/she may encounter. Remember, this experience can be overwhelming even for adults who have better developed coping mechanisms.

The child should be told in advance whether or not their loved one will be able to respond. The loved one's appearance should be described, including the presence of tubes and catheters, mechanical ventilators, and other medical equipment. Each of these aspects should be explained to the child.

Use correct terms and direct explanations at the level of the child's understanding. Props such as photographs of their loved one in the ICU, sketches, or even dolls are useful in explaining to the child about their loved one. Check with the ICU staff prior to taking any pictures.

If possible during the visit, each piece of, or least the major, equipment in the room should be explained to the child. By doing so, the unfamiliar, intimidating room will become more familiar to the child.

The child's increased understanding that the devices in the room are to make their loved one better or more comfortable will make the experience more reassuring to the child. The child should also be informed about the alarm bells and buzzers that they may encounter and what they mean (if they cannot be turned off during the child's visit).

This strategy focuses the child's attention, gives them specific ways to relate to their loved one and helps prevent their mind from wandering during the visit.

Prepare the patient for the visit

If possible, the child's visit should be discussed with and approved in advance by the patient. The patient should be prepared for potential emotions that the child may experience during the visit.

Remember the visit is for the child

Remember to remain focused on the purpose of the visit. The visit is for the child. Be there to support and guide the child and answer any questions he/she may have.

Plan a brief visit (5-10 minutes)

Prior to the event, attempt to envision the visit in your mind. The child may need to be guided during the visit by letting him/her know that they may touch and speak to their loved one. Do not leave empty minutes. This may allow the child's mind to drift about the ICU environment. A general rule of thumb is that the older the child, the shorter the visit.

After the visit

After the child visits with their loved one, leave some quiet time to sit with the child and ask if he or she has any questions regarding the visit. If their loved one looks markedly different from the last time the child saw them, you may want to bring a recent photograph to look at during this time.

What if the child does not want to visit?

If your child decides that he or she does not want to visit at this time, be sure to provide the child with alternatives to visiting such as making a card or sketch, writing to their loved one, or sending an object such as a flower.

When is it better not to visit?

When a loved one's appearance is markedly different or if the child is handling the situation fairly well, you may decide to discourage the visit or at least postpone it. Seeing a loved one who is comatose or looks dreadful is rarely a valuable visit for a child. Unless this is the last opportunity that the child will have to see their loved one, it may be best to postpone the visit.

Should a child be told about the death of a loved one?

Yes, the child should always be told the truth about death as soon as reasonable. Informing an adult that a loved one has died is a daunting task. This task may be even more difficult when the person receiving this information is a child. There is no "right" or "proper" way to do this. Do not shy away from using the words "death" and "die" in the conversation.

The conversation should be handled in a warm, sensitive and caring fashion. The child must sense the support of the parent or close family member when dealing with this tragedy. The child's questions about death should be addressed in a straightforward and honest manner.

The response of a child to the loss of a loved one is not dissimilar to an adult's response. Children do grieve. They may feel anger, guilt, rejection, anxiety, and frustration. Several excellent references are listed below for further information on this delicate topic.

Also, reference our section titled Loss of Loved One.



Should a child attend the funeral?

Yes. The child should be offered the opportunity to attend the funeral and, if old enough, he/she may even participate in the funeral. Some believe that a funeral is a rite of separation. The funeral may transfer denial into reality and offer the opportunity to say good-bye.

References

McCue, Kathleen. How to Help Children Through a Parent's Serious Illness. New York, New York: St. Martin's Press 1994
Doka, Kenneth J. Children Morning Mourning Children. Washington, DC: Hospice Foundation of America 1995
Grollman, Earl A. Talking about death A Dialogue Between Parent and Child. Boston, MA: Beacon Press 1990