Parenting a Child with a Chronic Medical Condition
Parents of a chronically ill child face many challenges. These challenges affect the whole family. This handout offers ideas to help guide you down the difficult path ahead. It includes tips and advice shared from other parents and families. We hope you will consider them. We want to help you find healthy ways to meet the challenges of having an ill child. We want you to know we are here to support you, your child and your family. Please feel free to contact your team, including chaplains, child life specialists, psychologists, and social workers, at any time.
1. Parent to Parent Communication:
Communication between parents is vital. All of your child’s caregivers (even if they don’t live under the same roof) need to hear and understand what is shared by the medical team.
When you are not on the same page, ask the care team for support and explanations. Parents do not always agree. It is important not to argue in front of your child. While you’re in the hospital we have rooms where you can talk privately. We also have indoor and outdoor space to “unwind.” If you would like an objective 3rd party you may ask your nurse to page a mental health staff member.
Using the “I” statement can be an important tool. For example, “Help me understand, I heard you saying” OR “I read from your e-mail/text/journal……and this is what I understand for our child. Is that correct?” Come to a common agreement about what is being said.
We all learn and understand differently. Some of us learn best by hearing, others by reading. You may want to find a system that works for both of you to share information.. This could be journal in your child’s room or at his home or homes. Taking a walk together is another way to share information, thoughts or feelings.
2. Parent, Child, Family Interactions:
There are many ways to help a child with a chronic medical condition.
Talk with your child about how her illness makes her feel. She may think the illness is her fault and feel guilty. If so, reassure her it is not her fault that she is sick. She does not need to feel guilty or responsible. Help her understand bad things happen without it being anyone’s fault. You can say it is unlucky that she got sick and it is okay to be sad or angry. Let her talk about her feelings.
Young children are concrete thinkers. For example calling anesthesia sleep may confuse him. When explaining cancer is a sickness, he needs to understand it is not catching. Let your child know you will try to answer questions honestly. The goal is trust and assurance. If he asks a question and you don’t know the answer it is okay to say so. If he asks a question which is emotionally hard to answer, explain that you will talk some more when you can. Crying in front of your child can be a part of building trust. Sometimes children feel guilty if something they ask or say leads a parent to cry. If this happens, reassure him he hasn’t done anything wrong.
When your child is with you, try not to talk or argue about things that might make her feel guilty or worried. These are some topics that often cause worry or guilt:
• Money
• Time away from work
• Relationships
• Worries about siblings.
Help your child be honest and open about his feelings. Be a role model by talking about your own feelings. Let him know you will be honest and you want him to be honest with you.
Sometimes your child may say ‘I hate you’ or even hit you. Often this is her way of letting you know she is hurting and scared. You can respond by acknowledging her anger and hurt. While you may feel guilty for not being able to protect her from her illness, you also deserve respect. You can point out healthier ways to show anger. Some ideas are:
• Squeezing a stress ball.
• Punching a pillow.
• Drawing what makes her angry.
• Talking with someone from your health care team.
Even though your child is ill, keep setting limits with him. If the rules change too much, he may be confused, sad or worried about why you changed them. Practical and fair rules can and should continue. Some ideas are:
• Keeping a regular schedule.
• Going to hospital school.
• Going to therapies and child life activities.
Our health psychologists have a handout on discipline for children with chronic illness. They will talk more with you if you would like.
Go out of your way to give your child extra praise and reassurance. Some examples are:
• Being brave
• Taking time to stay in touch with friends and family
• Being responsible by taking medicine and doing therapies.
There are books you can read with your child to help her feel proud and strong. Ask your health care team for suggestions.
Reassure your child that when hard things happen, families work together and support each other. Give him examples. Let him know he does not need to take care of the family or protect you. Here are some ways you can support him:
• Take turns staying with him
• Update family and friends through Caring Bridges website, Face book, etc
A child’s medical needs often affect sibling and family relationships. If your sick child has brothers and sisters, they will have many feelings. They may feel:
• Jealous or angry that their sibling is getting attention.
• Lonely when their parents are at the hospital.
• Guilty or worried they did something to cause the illness.
The changes in their lives may make them act differently. You can help by working to understand rather than just reacting to the behavior. If one or both parents must be away try to fit in quality time with siblings. Your treatment team can help with ideas about responding to your children’s feelings and behaviors. There are also resources listed at the end of this pamphlet.
3. Resources:
1. http://kidshealth.org/parent/system/ill/seriously_ill.html,
An article on parent/s caring for a seriously Ill child
2. The Chronically Ill Child, A Guide for Parents & Professionals Audrey T. McCollum, Yale University Press, 1981
A sensitive look at both the physical and emotional troubles children face at each stage of development. It also addresses the pressures facing their families. She focuses on ways to meet challenges give meaning to the ill child’s quality of life.
3. Health Facts for You, Sharing Difficult Information with Children ID # 7280
This article gives parents many tips and ideas about sharing difficult information with children. It includes developmental considerations, reactions to expect, ways to encourage support, and warning signs.
4. http://www.med.umich.edu/yourchild/topics/chronic.htm University of Michigan Health System: Your Child Development and Behavior Resources. A Guide to Information and Resources for Parents. Children with Chronic Conditions
This guide explains how kids adjust to chronic medical conditions at different stages; It also talks about the impact on the family; family coping; camps; sibling issues; and resources including books (for children and parents), organizations and websites.
5. A Different Dream for My Child – Meditations for Parents of Critically or Chronically Ill Children Jolene Philo, Discovery House Publishers, 2009
The author offers guidance through biblical insights and her own personal experiences. Parents can find spiritual wisdom, practical resources and tools.
6. How to Be Sick, A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers, Toni Bernhard, Wisdom Publications, 2010
Although Buddhist is in the title the author leads meditation for any spiritual practice. She combines her own experience with guidance, encouragement for the chronically ill, their family, friends, and loved ones.
7. We Want to Help: Sibling Concerns, Stephanie Farrell, available from health psychologists
8. Positive Behavioral Strategies for Children with Medical Conditions and their Siblings, Stephanie Farrell, available from health psychologists
9. How Can I Discipline My Child Who Is Already Suffering, Stephanie Farrell
This video discusses behavior issues of children with illness. It is available at uwhealth.org, #4218
10. The challenge of Parenting When a Child is Ill, Stephanie Farrell
This information covers picking your own battles, knowing your own triggers, and caring for siblings. It is available at uwhealth.org #13132
The information provided should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed physician should be consulted for diagnosis and treatment of any and all medical conditions. Call 911 for all medical emergencies. Any duplication or distribution of the information contained herein is strictly prohibited.
Last Updated: 09/18/2012
Copyright © 09/18/2012 University of Wisconsin Hospitals and Clinics Authority. All rights reserved. Produced by the Department of Nursing. HF#7419
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