by Alan D. Wolfelt, Ph.D.
A child you care about has a serious illness. You want to help, but you are not sure how to go about it. Whether you are a parent, friend or caregiver, this article will guide you in ways to turn your cares and concerns into actions.
- The New Face of Serious Childhood Illnesses
As few as thirty years ago, children with a life-threatening illness and their families were gently told to prepare for a certain death. Fortunately, medical advances have increased chances of survival for children with many types of serious illness. Children with many types of childhood cancers, for example, now have a much greater chance of long-term survival.
The child’s physician has probably talked with you about the child’s prognosis. Where there is a chance for recovery, there is hope. But for the child’s sake, as well as your own, you must also focus on the here and now. The child is seriously ill and will probably be undergoing many experiences that are frightening and confusing. You can help by walking with the child in his journey through illness.
- Don’t Underestimate the Child’s Capacity to Understand
Children do experience anxiety and grief related to their illness. So, they deserve support and understanding in coping with these feelings. Sometimes adults, in an effort to protect themselves, assume that children are incapable of understanding. They don’t talk directly to them about their illnesses, which can leave them feeling alone and isolated.
Children can cope with what they know. They can’t cope with what they don’t know. They deserve an atmosphere that creates open, two-way communication. Many seriously ill children will go back and forth between wanting to know details about their illness and not wanting to acknowledge they are even sick. It is critical to follow the lead of the child. Always listen first as you support open dialogue about any feelings, concerns or questions they might have. If they ask something and you don’t know the answer, simply say, “I don’t know.”
When the timing is right, explain the illness in language the child will understand. Explain what her treatment will be. Be specific when you can: “Tomorrow we will go to the clinic. We’ll be in a small room and a nurse will put a short needle in your arm. Through the needle, medicine will go into your body and help the sickness inside you go away. I’ll be right there with you the whole time.”
- Encourage Open Communication, But Do Not Force It
As caring adults we should encourage honest communication among the child, caregivers, family and friends. However, we should never force it. Children will naturally “dose” themselves as they encounter the reality of the illness in their life. They aren’t able to take in all the information at once, nor will they want to.
Answer only what is asked in the child’s terms. Don’t over-respond out of your own anxiety. Remember-children will determine with whom they want to share their pain. Often, the child wants to protect his parents or other close adults and will adopt a “chin up” attitude around them. This is a normal response and should be respected.
- Understand That the Child’s Communication Will Not Always Be Direct
Children, particularly seriously ill children, are not always direct about their thoughts and feelings. They may make statements, display behaviors or ask questions that indirectly suggest their understanding or awareness of a situation. These cues reflect underlying needs and deserve loving responses. Pay special attention to the child’s non-verbal means of trying to communicate any needs or concerns.
- What the Seriously Ill Child May be Feeling
Experiencing illness affects a child’s head, heart and spirit. While you wouldn’t want to prescribe what a child might feel, do be aware that they may experience a variety of emotions. Fear, anxiety, anger, sadness and loneliness are just a few of the emotions they may feel-one at a time or simultaneously.
These feelings are a natural response to serious illness. Perhaps you can be among those who enter into the child’s feelings without thinking they have to help the child “get over” these feelings.
- Learn About the Child’s Illness
You will be better equipped to help the child if you take it upon yourself to learn about her illness. Visit your local library and consult the medical reference books. Request information from educational associations, such as the National Cancer Institute or the American Heart Association. Talk to her physician.
If you educate yourself about the illness and its treatments, you will be a more understanding listener when the child wants to talk. You’ll also be more able to explain some of the confusing medical information to her. Finally, you’ll be a more effective advocate for her if she is too young to make her own needs clear.
- Support Parents and Other Important Adults in the Child’s Life
The serious illness of a child naturally impacts the entire family as well as friends. Not only should you be supportive of the child, you should also be available to support and nurture other family members and close friends. The adult response to the illness will influence the child’s response. So, in supporting adults you are supporting the child.
Perhaps you can be a caring companion and help in practical ways. Offer to provide food for the family, wash clothes, clean the house. Listen when they need to talk. Sit with the ill child to give parents a break. Help with other children in the family.
While words may be inadequate, your supportive behavior will be remembered forever.
- Don’t Forget Siblings
Take special note of the dying child’s siblings. Because so much time and attention is being focused on the dying child right now, his brothers and sisters may feel emotionally abandoned. Go out of your way to ensure their needs are being met, as well.
- Actively Involve Children in Treatment Plans
Seriously ill children benefit from being involved in their own treatment. Involvement helps create a sense of trust and gives them some measure of control. After all, if we know that children are aware of the seriousness of their illness and that open discussion helps them cope, then it only follows that they must be actively involved in treatment efforts.
Ask the sick child’s physician to explain treatment options to him in age-appropriate language. Allow the child time to think about this information and ask questions. Then take his responses seriously. Whenever possible, incorporate his wants and needs into the treatment plan.
- Be Prepared for the Child to Ask About Death
Depending on the seriousness of the illness and the information she has been told, the child may well ask you if she is going to die. Don’t say “No” unless it is definitely true. Instead, explain to the child the different possible outcomes of her illness. Remember, children aren’t automatically afraid of death. They are more often curious about it. Now is a good opportunity to talk about death in general and the natural lifecycles of all living things.
- Allow Children to be Children
Although a serious illness is influencing the child’s life, he still has the same needs as other kids-needs for friends, for play, for school etc. Even very ill children can often participate in some form of play, including board games, puzzles or video games.
Peer relationships are very important to children, and the illness will likely create some social and physical barriers to these friendships. As an adult, you can see that friendships continue to be nurtured. Arrange a special party for the sick child. Make play dates with the child’s one or two best friends. Help the children write letters back and forth when contact isn’t possible.
- Embrace Your Spirituality
If faith is part of your life, express it in ways that seem appropriate to you. During this difficult time you may find comfort and hope in reading spiritual texts, attending religious services or praying. Allow yourself to be around people who understand and support your religious beliefs.
- A Final Word
All children, seriously ill or not, have the right to be nurtured, to be children and to make choices that impact their lives. There is nothing more difficult for families than confronting the serious illness and potential death of a child. As caring adults, we have responsibility to maximize the quality of life for the child, the family and friends.Ã‚ I hope the information in this brochure will help you put your love into action.