Children with Chronic Health Issues and the Family

posted on March 02, 2009 11:18

Idaho CareLine: In Idaho, Dial 2-1-1 or 800-926-2588

Children with Chronic Health Issues and the Family

There may be times in life when you experience the challenge or upset of having an ill child. Many researchers have found that having an ill or injured child is the most stressful event that a parent faces.

The number of children with a chronic condition — one that is long-term and not curable, or leaves the child with some limitations in his/her ability to live a normal life — is increasing each year. Families of children with a chronic illness may become stronger, weaker, or dissolve because of this challenge.

Parents often feel torn between taking care of the ill child, raising their other children, demands of work, and finding any time to care for themselves. Parents will find that the times of stress, the ups and downs which at first seem impossible to deal with, become easier and more expected as they learn to deal with the child’s illness.

There is no right or wrong way for you to feel. Each family must find its own way of dealing with the stress and life changes that occur with a chronic situation.

It is important that couples recognize that their partner may deal with the stress differently than they do. Many people feel the need to talk about what is occurring; others choose to think or keep their feelings to themselves. Neither is right nor wrong. What is important is that you communicate with each other and support each other through this process.

If there are other children in the family, understand that siblings can be affected quite a bit by having a brother or sister ill or injured. They feel torn between wanting their parents with them and their routine back to normal and understanding that parents need to be with the ill child.

They may feel guilty over wishing parents were at home, or angry over the entire situation and how it impacts them. Children do not like to see their parents hurting or in tears. They also may be caught between parents who are stressed and taking their hurt out on each other.

"Risking to share" helps to create strong relationships

Feelings are neither right nor wrong.
Feelings are simply messages telling us what's going on inside.
Risk to identify what you are feeling, label it, and share it.
Don't let negative feelings go unexamined or expressed in an appropriate manner.

From "Relationships, Entrusting Our Hearts," by Charles Finck and appearing in Connections, Volume 6.2, Winter 2002, Washington State Fathers Network

For Parents

Recognize that you cannot do everything. It is all right to let others assist you. When someone says, "Let me know if there is anything that I can do,” let them. Have a list handy. Give them tasks they can do such as going to the grocery store, cooking and delivering meals to your home, carpool your children to sports events or school, laundry and/or housecleaning chores. Ask for transportation to and from the hospital for you or for the sick child’s siblings, if needed.
Allow others to sit with the ill child so you can take breaks, see your other children, or even get a good night's sleep at home. Let friends come to your home so you may leave for short periods of time.
Develop a schedule that will keep you on track when times get stressed.
Eat meals, take walks, spend time with a spouse, and talk about things other than your ill child.
Allow religious affiliations and beliefs to support you and the family.
Decide who else needs to know such as school counselors, teachers, child care providers, and the school nurse. All can provide support for your family.
Use counseling services as needed.
Understand that your other children may regress (go back to sucking a thumb, needing diapers, etc.). Some regression is to be expected as this is a normal way of handling stress. However, be watchful of changes in behavior, acting out, getting into trouble at school, not following the rules at home, etc. If you are seeing these changes in your other children, then you probably need to allow more people to be of help or seek counseling.

For Siblings

Attention. At least once a day, attempt to touch base with each child to see how he/she is doing. Try to connect on a routine basis such as before bedtime, before naps. As much as possible, try to protect special meals with children and outings. Attempt to attend their functions and school/outside interest activities. Do not make promises you cannot keep.
Keep the family rules the same. What is the expected behavior? It should be the same as before the illness.
Schedules. Children need to know their routine and what the schedule is for the day.
Visits. Allow for short visits to the hospital, explain to the visiting child what to expect prior to the first visit. Describe what might be seen or heard. Have a chaplain, nurse, or friend available to assist the child after visiting if needed.
Tell the truth to the siblings. If things are not going well, they will know probably before they are told. If age-appropriate, include them in what is happening and the health decisions being made.

There are no wrong words, but there are words that matter. Don't be afraid to ask how you can help.

Tips for Friends and Family Members

If the crisis is not happening in your family but to a friend or family member, keep offering to help. Be specific about your offer. Instead of saying, “Let me know what I can do,” make a specific offer such as, “I will carpool this week and do the grocery shopping.” Keep offering until the situation is over, as many families with ongoing situations begin to feel forgotten.

Article by Patty Soran RN, MS, Clinical Resource Manager at Saint Alphonsus Regional Medical Center, Boise, Idaho, and Cara Brown, RN, MSN, Children Matter, Boise, Idaho.

Additional Resources

(Note: You'll find these articles at different web sites. Use the "back" button when you're done to return to this page.)

ARCH National Respite Network — Fact sheets about Crisis Nursery Care, Respite for Children with Disabilities & Chronic or Terminal Illness, Siblings of Children with Special Health and Developmental Needs.

2-1-1 Idaho CareLine — Referrals to Idaho resources, hospitals, or counselors/support groups.

Touchstone, the center for grieving children and adolescents — Supportive environment for children, adolescents, and their families who have experienced the death of a parent, sibling, or close family member. Includes helpful information as well as classes/support groups available in the Boise, Idaho, area.

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