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This information was reviewed and approved by Jennifer Moyer Darr, LCSW (3/1/2019).

Illness Action Plans (IAPs) can be developed for all chronic illnesses.

For instance, the American Academy of Pediatrics recommends that children with asthma have an action plan to help with controlling their illness. IAPs help you know what to do every day to manage your child's chronic illness, like which medications to take and when. In addition, it will help you know exactly what to do when your child's illness is getting worse and when your child is having more frequent symptoms. Knowing what to do and when is important for managing any illness.

Ask your child's doctor about developing an IAP for your child. This should include steps to take for regular care and for when your child is getting sicker. Make sure your child's health care provider helps you write down everything that goes into the IAP, no matter what the illness. Make sure to ask all of your questions of the health care provider; you are the consumer. The plan can then be shared with school nurses, physical education (PE) teachers, babysitters, relatives and others who care for your child.

 

Learn about Illness Action Plans:


Developing an IAP
Using an IAP
When to Adjust the IAP

 

Developing an IAP


Below are instructions about what should be included in each section of an IAP.

  • Description of the Diagnosis: List the child's diagnosis here. Things like asthmaeczemafood allergies, and diabetes should go here.

  • Daily Care Needs: List the medicines, treatments and equipment your child might require while at school/day care or on overnights, and the times they should be taken. For teens, it may include rescue inhalers when going on dates. Things to avoid, such as specific foods or possible triggers, also should be included.

  • Include tips to improve cooperation, such as providing rewards and distractions as appropriate for your child. Some examples of rewards include a sticker chart for positive reinforcement, and using bubbles, games or stress balls to help with distraction. Adolescents may enjoy later bedtimes, increased allowance or "overnights" as their rewards.

  • Warning Signs: List signs that caretakers can look for to tell them if your child is having difficulties. Don't forget to include such things as asthma peak flow zones, if appropriate, or signs of allergic reactions.

  • Activity Level: List any special requirements or accommodations your child might need at school, such as taking medication before physical activity, breaks during PE, an elevator pass or getting more time to walk between classes.

  • An Emergency Action Plan: If symptoms continue to worsen after regular steps are taken, it is important to have the necessary medications on hand and a step-by-step action plan, including when to go to doctor visits, when to go to the emergency room or when to make 911 calls.

  • Contact Information: List people to call in an emergency and their phone numbers.

 

Using an Illness Action Plan


Once the IAP is developed:

  • Provide a written copy of the action plan to adults caring for your child, especially babysitters and key school personnel.

  • Meet with the adults caring for your child, such as the child's teacher and nurse, and explain it to them. Make sure these adults know what to do and feel comfortable following the IAP. Your child may be able to help demonstrate some of his or her care. For school, agree on a "signal" between your child and teachers so that your child can obtain medical care without disrupting the class or feeling as if everyone is watching.

  • Check with your child regularly to see how the action plan is working. Make sure your child knows what to do.

  • Check back with the adults caring for your child to see how the action plan is working.

  • Have extra copies of the plan to provide to professionals in case of an emergency.

  • Talk with the school about implementing a 504 plan.

 

When to Adjust the IAP


Some signs of poor illness management are easier to notice than others. Signs that the Illness Action Plan needs to be adjusted vary with age and development.

These signs may include:

  • Increased symptoms of the chronic illness/condition, both in general or consistently worsening throughout the school day

  • Decreased cooperation with illness care

  • Overlooking and/or denying symptoms

  • Exposing oneself to triggers, like foods or animals to which they are allergic

  • Missing school and/or activities

  • Withdrawal from family and friends

  • Mood changes.

 

Reasons Why the Illness Action Plan Is Not Working


Studies have shown that older children with a chronic illness are more likely to experience symptoms of depression and engage in risk-taking behaviors such as using cigarettes, drugs and alcohol. They may be angry about the illness and about all of its responsibilities and how the illness sets them apart from other children and teens their age. This can negatively impact their emotional and physical health.

Here are some other reasons for a failed action plan:

  • Denial ("I feel fine today. I don't need my medications.")

  • Lack of a routine for daily care, such as taking regular medication at consistent times

  • Lack of praise, rewards or privileges from the caretakers for good daily care by the child/teen

  • Forgetting to renew prescriptions.

 

How to Improve the IAP


As a family, you can do many things to help take charge of your child's illness. If things are not going well, it may be time to step back and take a fresh look at how the IAP has been developed.

Some steps you can try include:

  • Reorganizing the routine for daily care so that it is more workable and convenient for family members

  • Setting up clear expectations and time frames for completing the daily care with or by your child

  • Setting up rewards, including encouragement and praise for good daily care by the child

  • Clarifying behavioral limits and consequences, and holding the child accountable for poor daily care

  • Encouraging age-appropriate responsibility taking

  • Praising mature behavior.


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