Proactively seek information to understand the illness and consider treatment and care options. Write down and ask your child's doctor questions, and search the Internet and library for reliable sources. A number of age-appropriate children's books related to chronic illness can help you explain things to your child simply, in terms they understand.
Get professional help from pediatricians, specialists and therapists to form a care team for your child. Get community help from family and friends.
Get social help from support groups, national organizations and local hospitals, where you'll find others with similar experiences, so you know that you and your family aren't alone.
Create and follow a plan of action for treatment and care. Prepare a medical summary and emergency care plan, and make decisions on legal issues, guardianship and transferring care. Set short-term, realistic goals.
Listen to your child, verbally and nonverbally, and help him constructively express his emotions. Be open, honest, available and supportive.
Consider your child's age, maturity and development to judge how appropriate it is to share information with her, involve her in decision-making and health management, and what social activities she's able to do. Teach your child to manage her own condition and be her own advocate with her healthcare and education.
Keep perspective and manage elements in your life you can control, such as your own emotions and stress, and let go of unnecessary obligations. Encourage self-management and independence for your child, and help him make decisions, especially ones he can control, such as which arm to draw blood from or what date to have surgery.
Don't forget to be a parent. Maintain structure, discipline and daily family routines to normalize the whole family. Offer praise and encouragement without being overly protective or permissive.
Help your child find things he enjoys by emphasizing his strengths and encouraging him to try new things. Participate in family activities Schedule one-on-one time for your child with other children
Be willing to make lifestyle changes and be patient—change takes time.
Continue to check in and assess your child's illness, as well as her emotional and social health. Make sure she understands her illness and fill in missing information, correct misunderstandings and add personal responsibilities as appropriate. Keep informed of the latest treatment and care options, and recognize changing physical, emotional and social needs.
By actively coping with your child's chronic illness, you can improve your family's quality of life while minimizing the negative impacts and affects of the condition. You can also help your child have more positive outcomes, such as reduced pain, better recovery from symptoms, improved quality of care and physical function, and ultimately, feelings of peace.