CHAPLAINCY PRESENTATION: HELPING CHILDREN MAKE MEANING OF SERIOUS ILLNESS AND DEATH OF A FAMILY MEMBER
On March 26th, Bev Leute Bruce, Child Life Specialist, spoke about how we, as health care providers, can make a difference in the
lives of children and families in crisis. She helped us to understand how children view hospitalization, illness, and death, and the ways in
which we can gently assist them in comprehending and coming to terms with these complex issues.
Piaget theorized that the ways in which children learn are key to their understanding of death. Young children will "practice centering" (i.e.,
have a self-centered worldview) and as concrete thinkers will need repeated reassurance that they did not cause the illness and that they will
not die or become sick if they have been in contact with the ill person (unless, of course, the illness is contagious).
Using Erikson's work Bev theorizes that crises prompt children to realize their sense of self in relation to others and that they universally
feel a great sense of abandonment. It is important to let the child know that their parent will never be alone in the hospital, that a doctor,
nurse, relative, etc. will always be with or available to them. The child also must be reminded that they, themselves, will never be alone,
that someone will always be there to care for them.
Teenagers in many ways are the most vulnerable and neglected population of children. It is often assumed that they understand what is going
on during a family crisis. They experience a lot of anger and raw feelings. Having a terminally ill parent or a medical crisis makes them
different from their peers, which is particularly challenging at this developmental stage when identification with peers is so important.
Kids need to know what will change and what will stay the same as a result of serious illness. Tell them, for instance, "Mom is in the
hospital, but (Dad, Aunt Jane etc.) can still take care of you" or "Your Mom is sad that your Dad is very sick, but she still loves you".
Let children know that it is okay to have many mixed feelings about the crisis. Remember that children have a limited hold on language,
whereas adults have a lot of words to explain actions and feelings. A staff member recalled a young boy who was in the hospital for treatment,
acting very hostile and resistant. It was eventually revealed that the young boy thought that an 'IV' was a needle that would be stuck in his
eye! Children need to have medical terminology explained to them.
It's important to let kids know that it is okay to play. Sometimes kids who have a family member with a serious illness feel as though they
need permission and that playing during such a serious time is wrong. Bev uses a lot of puppets in her work, helping kids talk in displacement.
Books are a subtle way to help a child feel connected to someone else who has experienced a situation similar to theirs and to keep them informed.
Books that feature pictures of animals, instead of people, are less threatening to children. A few recommendations include "The Kissing Hand",
"How to Help Children Through A Serious Illness", "Talking with Children About Loss", "Runaway Bunny", and "Lifetimes". Bev has compiled an
extensive bibliography, including video tapes and other teaching materials, which is available through the CRC.
Explain grief to kids. Bev showed a diagram of the grief process for children. It likened grief to a wave. The uprising to the crest of the
wave was labeled 'confusion and denial', the break of the wave was 'sadness and mourning' and the uprising to the crest of the next wave in the
series was 'healing'. Videos can also be helpful in explaining and understanding the grief process. During the presentation, Bev showed a video
called, "What do I Tell My Children?", featuring Sandra Fox of the Good Grief Project in Boston. This video identifies four stages of grief:
understanding, grieving, commemorating, and going on. Sandra Fox emphasized the importance of the "understanding" stage. Kids need to understand
that when a person is dead, they are never coming back. They need to be told that death is when the body totally stops working.
Many of those who attended the presentation have had patients who are parents experiencing life-threatening trauma or illness. Bev suggested
collecting the following information to assess how the children involved in this kind of crisis situation are feeling:
Structure and Choices
As mentioned above, the child's choice of whether or not to visit a hospitalized relative should be respected. If the child decides to visit,
s/he will need adequate preparation. Be thoughtful of the time of day the visit will occur. Mornings are usually busier than evenings.
Explain to the child what s/he will see (hear, smell, etc.) and what s/he will be expected to do. Let the child know what the patient's room
looks like, what the patient looks like, and what kinds of accommodations they are going to have to make in order to visit. For example,
"Mom has a tube in her mouth" or "when we get there you will have to wear a mask over your mouth". The older a child is, the more preparation
will be required.
If the appearance of the patient has changed dramatically, Bev suggests showing the child a recent picture and reminding them that, "Mom
may look different, but she is still your Mom and she still loves you". One staff member at the presentation remembered an eleven-year-old
boy who was at MGH, terminally ill with a brain tumor. The staff member spoke with his younger brother, who sadly remarked that his comatose
brother was not even his brother anymore, since he could play or talk with him. The staff member explained that just because certain parts of
his ailing brother did not work the same way they used to, that he was still the same person. As an analogy, she held up her hand and asked
the child, "If my pinky finger doesn't work anymore, if only four of my fingers work, does that mean my hand is no longer a hand?" The younger
brother understood her analogy and felt better.
Once the child is at the hospital, keep visits brief. Young children, because of their ability to play, undistracted, are generally able to
visit longer than other ages of children. Be sure to bring toys. Bev suggested letting the child know that if they want/need to leave the
patient's room, that's okay. Some children may not want to see the patient at all, but may just want to see the waiting room, the nurses
and the doctors who care for the patient.
If the child decides not to visit the loved one in the hospital, Bev suggested a few ways to keep him/her connected to the patient. Bev
suggested using art, photos, or letters, and developing a 'treatment calendar' to help the child understand how long the loved one will
be in the hospital. She stressed the importance of making the first 30 minutes of returning home from a hospital visit exclusively for the
child. This allows the child confidence that although one loved one is unavailable, another will be there for them.
Bev Leute Bruce first became interested in children's understanding of serious illness and death while working as a Child Life Specialist at
Boston Children's Hospital. She observed many children, and wondered why some children thrived in the healthcare system and others did not.
What were the differences between these children? Bev believes that a child's age, temperament and their understanding of a crisis situation
will determine how well they are able to cope with illness and death of a family member or themselves.
How Children Understand Death And Deal With Crises
Bev described the ways in which children understand death through the writings of Jean Piaget and Erik Erikson.
How Can We Help?
Bev stressed that children need to be kept informed and given honest information. She outlined some common concerns, issues and tips.
Encourage family members to give the child choices as often as possible. Kids need structure and routine, but crises and hospitalization bring
inconsistency. Choices that range from what the child has for dinner to whether or not they have to visit the family member in the hospital are
important for the child to have a sense of control.
Hospital Visits
Hospital visits can be especially traumatic to a child. Bev had many suggestions on how to help children handle this situation.
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