When your child is diagnosed with a chronic illness, it’s common to feel stress, sadness, worry, and even anger. These feelings are normal and, with the right support, you can forge on to provide the best care for your child.
But how can you best support your child in coping with their illness?
Explaining Chronic Illness to a Child Based on Age
Toddler/Preschool
Young children have a vague understanding of illness. Explain their situation to them using words they know. For example, “Your body needs special medicine to feel better.” Stay with your child during procedures, soothing them and interacting with them as much as possible.
Kindergarten
Kindergarten children are curious and start asking questions. They can grasp more detailed information but still need simple explanations. Use stories and analogies, like comparing the body to a machine that needs repairs. It’s important to reassure children that they are not ill because they have done anything wrong.
Elementary School
Children of this age group can grasp a better understanding of their illness, how it affects their body, and why they need treatment. Ask them questions about their own understanding of their illness so you can be sure they haven’t misinterpreted or misunderstood you.
Middle School
Middle school children are more independent and capable of understanding complex information. They may also have concerns about fitting in with their peers. Acknowledge their feelings and concerns about their condition and provide emotional support. Help your child prepare a short script to explain their illness to others.
High School
Many teenagers want greater autonomy in managing their treatments and medication plans. Encourage your teen to take more responsibility for their illness, ask their own questions to service providers, and get more involved in the daily management of their condition.
How to Best Support a Child with a Chronic Illness and Manage Their Stress
Supporting a child with a chronic illness involves more than just managing their medical needs. It requires a holistic approach that includes emotional, psychological, educational, and stress management support.
Educate Yourself
Understanding your child’s illness is the first step to providing effective support. Learn about the condition, its symptoms, treatment options, and how it can impact your child’s daily life.
Open Communication
Encourage your child to express their feelings and concerns about their illness. Listen actively and reassure them that it’s okay to talk about their fears and frustrations.
Create a Consistent Schedule
A consistent daily routine can provide a sense of normalcy and stability for your child and the rest of the family. Set regular times for medication, meals, rest, and activities.
Set Expectations
Discuss with your child what is expected of them regarding chores and responsibilities. Consistency in expectations helps your child understand their role in the family and contributes to a sense of normalcy.
Appropriate & Consistent Discipline
Use positive reinforcement to encourage good behavior and set clear, reasonable consequences for rule-breaking. Every child needs the security of boundaries, even those with chronic conditions.
Ensure They Follow the Treatment Plan
Monitor their adherence and provide reminders if necessary. Involve your child in their care to create a sense of responsibility.
Don’t Get Into a Power Struggle
Instead of using force or punishment, try to understand their resistance and address any underlying fears or concerns. Use positive reinforcement and offer choices when possible to give them a sense of control.
Listen, Be Open, and Understanding
Validate your child’s emotions and provide reassurance. Being open and understanding helps build a supportive and trusting relationship and improves their stress.
Let Them Live Their Lives
While it’s important to manage their illness, it’s equally important for them to have a fulfilling and enjoyable childhood. Balance medical needs with opportunities for socialization, play, and learning.
How to Help Your Child Deal With Procedures for Chronic Illnesses
We often feel we are protecting our children by not telling them about uncomfortable medical procedures. However, fear of the unknown can increase stress and anxiety in children. It also can scar the trust they have in their parents or caregivers.
Be honest and explain the reason for the procedure in an age-appropriate way. Offer rewards you are sure you can keep and model calm, confident behavior.
Many pediatric hospitals have child life specialists available to help children prepare for various medical procedures or surgery.
Chronic Illness and School
Managing chronic illness can take a toll on a child’s academic success. It’s important to provide the right support so your child can thrive both academically and socially in school.
Communicate with the School
Discuss your child’s condition with teachers, school nurses, and administration staff. Work with the school to create an IEP (Individualized Education Plan) or a 504 Plan, outlining accommodations and support services your child requires.
Establish a Routine
Make sure your child knows when and where they can take their medication during the school day, and coordinate with the school nurse if necessary.
Academic Accommodations
Work with the school to allow flexible scheduling for your child, including additional time for assignments and tests if needed. Request classroom modifications, like preferential seating or the use of assistive technology.
Social Support
Encourage the school to educate classmates about chronic illnesses to foster understanding and empathy. This can help reduce stigma and support social inclusion.
Supporting your child’s involvement in extracurricular activities and social events allows them to engage with peers and build friendships.
Stress Management Tips for Parents of Children with Chronic Conditions
Caring for a child with a chronic illness can be overwhelming and emotionally taxing. As a parent, it’s crucial to manage your own stress effectively to maintain your well-being and provide the best support for your child. Here are some practical tips to help you navigate the challenges and stressors that come with your child’s condition.
Don’t Compare
Focus on your child’s unique journey without comparing it to others.
Research
Stay informed about your child’s condition but avoid overwhelming yourself with too much information.
Get Support
Lean on family, friends, and support groups for emotional and practical support.
Counseling
Consider counseling or therapy for emotional support and coping strategies.
Talk to Other Parents
Connect with other parents of children with chronic conditions for comfort, advice, and shared experiences.
Accept Your New Normal
Embrace and adapt to the changes in your new reality.
Make Time for Yourself
Prioritize self-care to prevent burnout and maintain your well-being.
Use Stress Reduction Techniques
Incorporate relaxation techniques like deep breathing and mindfulness into your routine.
Do Things You Enjoy
Engage in hobbies and activities you love to boost your mood and provide mental breaks.
Getting Home Health Care For Your Child With A Chronic Illness
Home health care can significantly help those with chronic conditions and offers invaluable support to their families. It’s important to choose the right pediatric home health care so you can be sure your child is receiving the best support from the comfort of their home.
Americare Helps Children With Chronic Illnesses
Americare helps children with chronic conditions in New York get the best pediatric home health care they need to be fully supported with managing their illness. Reach out to an Americare representative to find out how your child can benefit from pediatric home health care.