For Parents

Coping with Chronic Illness

Pediatric heart disease is most often a lifelong condition that touches every aspect of family life.

It impacts family relationships, social life, emotional state and financial resources, which can be overwhelming. If your child has a chronic heart condition, your family may seek support to help you and your family cope.

Some Good News

Research shows that children with chronic disease often perform as well as healthy children in school. In addition, their self-concept and reactions to stress appear to be similar to those of healthy children.

Recent Pediatric Heart Network research shows that children with repaired complex congenital heart disease judged their physical health, self-esteem, behavior and mental health to be better than their parents perceived these factors.

Suggestions for Coping

Helping Your Child Cope

Some children with chronic illness have more behavioral problems which may be due to anxiety and feeling different from other children. Try to avoid treating your child with “kid gloves.” Encourage your child to experience everything in life they physically can. The more activities they participate in, the less different they will feel from others, and the more in control they will feel. If more help is needed, formal or informal support groups for children and individual or family therapy have shown to be highly effective in helping kids to cope with their chronic illness.

Helping Yourself Cope

When you are first confronted with your child’s illness and care, you may feel stressed. Some ways to cope with stress include:

  • Recognizing and communicating how you feel
  • Joining a support group for parents or caregivers
  • Understanding your own coping process
  • Seeking group or individual therapy
  • Taking care of your own health with proper nutrition, exercise, and fun (yes, fun!)

Remember, it takes time to mentally and physically adjust to this new diagnosis and the changes it brings to your life. Developing a sense of humor is a great survival tool for coping with stress. It is very important to stay hopeful. If you try to find the positive side of things, you will be teaching your child a valuable lesson, and maintaining your ability to cope as well. Children are incredibly positive and resilient and will look to you for their example.

Specific Topics to Consider:

Children with chronic illnesses are more likely than other children to experience frequent doctor and hospital visits. Some of the medical procedures they undergo are frightening or painful. Hospital stays can also be frightening and lonely. In some cases, a young child may believe that they are being punished. Learn to talk with your child about their illness and the frightening procedures that might happen. Communication will relieve some of their anxiety. You may also consider counseling or talking to your provider to help prepare for and work through these times.

Sometimes when one child is very ill, it can be difficult to provide the attention your other children need. Make a special effort to give your other children attention to work through the everyday changes in their lives also. Many hospitals or clinics have programs for siblings of patients, and often Child Life Specialists or Social Workers can provide recommendations and support. Communicating needs to your larger family unit, or support network, can also help in providing one-on-one time or special experiences for your other children.

As your child grows up with their chronic illness, they will need to discover a balance between dependence and independence. Chronic illness may limit a child’s activities a lot or a little, and the limitations may come and go. Consider these ideas for fostering independence:

  • Encourage your child to participate in as many family jobs and activities as possible.
  • Ensure that your child can maintain friendships with peers.
  • Seek out peer networks of others with CHD for older children and teens.
  • Identify activities with your healthcare providers that are suitable for your child’s condition.
  • Allow for mistakes and messes.
  • Provide consistent, appropriate discipline to all of your children. It is very important to teach your child with a chronic condition that the same family responsibilities apply to them. This approach will also help your child feel normal.

Financial planning is an important activity. Look at what you’ll need to plan for and what resources (savings, insurance benefits, Medicare, etc.) are available. Read your insurance and disability policies so you understand what benefits are available and when you’re eligible. Keep copies of all letters and forms concerning insurance, bills, hospital records, and prescriptions. Some medical expenses are tax deductible, while others may be reimbursed through your insurance plan. Good record keeping can make this process go more smoothly.

One parent in a family may need to take time off work to care for a sick child, for short and long terms, or on multiple occasions. The Family Medical Leave Act that is offered by some employers may be one option to research. If you can’t work outside of the home, you may be able to continue working from home in an alternate position. Some of the condition-specific organizations provide information about local and national resources. Your local departments of human services or local caregiver support groups may also provide resources for childcare and other needed supports.

Family members and friends may be willing to help as well. Trade services with other parents or caregivers. For example, if you like to cook, you could offer to make dinner for a friend or neighbor, in exchange for them doing the grocery shopping. Be creative about the tasks you trade.

Chronic diseases are often unpredictable, and your family can feel overwhelmed and out of control now and then. You may at times feel tired, irritable or depressed. Your relationship with your partner and sibling relationships may be tested during times of stress, such as a hospitalization. Be sure to take time to step back, share feelings, and consider how you and your family can support each other. Look for resources in your own community to help everyone in the family unit.

Helpful Resources

Some of the medical procedures your child may undergo can be frightening or painful. Pain and Your Baby and Pain and Your Child or Teen are two resources that can help in dealing with such procedures.

Sometimes when one child is very ill, it can be difficult to provide the attention your other children’s need. Siblings of Kids with Special Needs is a good website from the University of Michigan that can help with talking to other children in your family. Ask your hospital or clinic if they offer SibShops or similar programs for siblings.

Financial challenges can add stress to an already difficult time. Some of the condition-specific organizations provide information about local and national resources. Check out other Helpful Resources for more information.


Communicating with Schools and Teachers

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