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Parenting a child with chronic illness can be a challenge for the entire family. Emotions like anger, sadness and worry, paired with invasive medical procedures, medication side effects and disruptions to family routine, can lead to a volatile mix at home.
Amid the stress and strain of chronic illness, it’s tempting to let challenging behavior and emotional outbursts slide. But like all children, children with chronic illness do best when held to standards of behavior, appropriate discipline, and consistent limits.
Communicate openly. Having a good understanding of your child’s illness will not only help cultivate appropriate expectations of your child, it will enable you to answer any questions your child may have in language your child can understand.
Maintain a schedule. Your child and family will function best when their daily schedule is predictable and consistent. Make sure your child goes to bed, wakes up, and eats healthy meals at regular, predictable times.
Establish limits and behavioral expectations. Your child will behave best if you establish clear expectations (“You need to clean your room before you can play outside”) and set firm limits (“You may not go outside because you did not finish cleaning your room”). When possible, provide opportunities for your child to make decisions, as this will promote independence and confidence. Clear expectations and firm limits help your child to become emotionally well adjusted and successful in managing their chronic illness.
Use appropriate and consistent discipline. Consistently use discipline strategies that encourage your child to behave appropriately. Provide frequent praise (“You did a great job remembering to take your medicine this morning”) and encouragement (“When you remember to take your medicine in the morning, you feel so much better during the day!”). When your child engages in inappropriate behaviors, timeouts for younger children and loss of privileges for older children can decrease unwanted behaviors.
Promote treatment adherence. When your child does not follow the treatment plan, there are increased risks to your child’s health. Support your child in following the treatment plan with clear and simple explanations, praise and encouragement, appropriate limits, and consistent consequences (see Adherence handout).
Avoid power struggles. Because your child has a chronic illness, he/she may sometimes feel powerless to control even the smallest things. Your child may try to take control over situations by behaving inappropriately (throwing temper tantrums, refusing to take medication, staying out past curfew). You can help your child feel more in-control by offering choices whenever possible.
Take care of yourself. In order to effectively care for your child, it is important that you also take care of yourself. Eat a healthy diet and maintain a sleep schedule. Seek out support from family and friends. Self-care helps you parent effectively by increasing your emotional and physical wellbeing and teaching your child how to seek appropriate support (see Stress Management for Parents handout).
Help your child cope. Encourage your child to share thoughts and feelings about dealing with his or her illness. Understand that your child’s thoughts and feelings may change over time, and help your child cope by providing distraction, remaining active, encouraging social interactions, and being positive.
Work closely with the school. When your child misses school, the transition back to school can feel overwhelming. It is best for your child to return to school as quickly as possible in order to limit falling behind and to maintain a daily routine. Providing your child with structure and support during this transition is essential. When necessary, communicate with your child’s school team to allow for the development of appropriate accommodations (such as a 504 Plan or an Individualized Education Plan; See School handout).
Consider discussing these concerns with one or more members of your child’s treatment team, such as the physician or psychologist. If necessary, you request a referral to a mental health professional specializing in working with children with chronic illness. Where can I find additional information or support about parenting a child with a chronic illness?
Consider discussing these concerns with one or more members of your child’s treatment team, such as the physician or psychologist. If necessary, you request a referral to a mental health professional specializing in working with children with chronic illness.
Our Family Resource Liaisons are master’s level clinicians who are available to help individuals and families navigate the mental healthcare system by providing contact information for mental health resources in your community.
Family Resource Liaisons are available by phone at 720-777-4978, Monday through Friday, 8 a.m. to 6 p.m.