Parent Toolkit: Building Resilience in Families With Chronically Ill Children

The diagnosis of a serious illness is a turning point in the life of a family. Illness disrupts personal, social, work and family routines. Children with chronic conditions and their families face ongoing medical appointments and procedures, as well as changes in daily life. These changes can upset a family’s balance psychologically, socially, and even physically. Fortunately, families can find new ways of coping with these changes that can help build resilience.

What is resilience?

Resilience is the ability to deal with life’s challenges in a positive and productive manner. It can buffer and protect a child during times of high stress. Resilience is key to success in coping with medical problems, school, and important life events. Adults play a key role in helping children become more resilient.

How do I help my child to be resilient?

• Encouraging your child’s unique talents and interests can help boost resilience. Get involved in your child’s education and activities. Help your child with homework. Encourage your child to develop talents and engage in activities, and teach them how to find and use resources. Adolescents in particular can greatly benefit from the independence to manage what’s in their control.
• Promote positive social connections by encouraging your child to make and keep friends. Encourage interaction with relatives and adults involved in youth-directed activities.
• Provide consistent and clear expectations. Set, explain, and enforce rules and expected behaviors consistently and fairly. This can be especially hard for the parents of a child with a chronic condition, but try your best! Learn more about behavior management.
• Try to reduce the sense of blame and guilt for your child. Many children feel guilty about having a chronic illness. Help them to understand that their medical problems are not their fault — and that’s true for parents, too.
• Controlling stress encourages resilience. Try to practice positive stress management strategies such as meditation, controlled breathing, yoga, and exercise. Learn more about coping with medical procedures.
• Help your child label emotions in words your child can understand, and teach appropriate ways to express emotions, both negative and positive ones. You may not always agree with how your child is feeling, but validating feelings opens communication. Children need parents to listen. (Example: “So, you are worried about your upcoming surgery. How can I help to support you?”)
• Increasing hope has been shown to support resilience in children. You can increase hope by trying to remain optimistic in the face of disappointment and helping your child focus on achievable goals.
• Showing your love and support always helps your child build up resilience.

What can I do for the rest of my family?

Build up your support system. People who can provide emotional support (listening, encouraging) are often even more helpful that people who can provide logistical support (such as mowing the lawn or making dinner). During times of increased stress, both types of support are helpful.

• It’s okay to ask for help! It may feel hard at first but there are people out there (such as parents at your child’s school, religious communities, disease-specific national organizations) who want to help. And try to remember that emotional and logistical support is a key to building long-term resilience for you and your child!

Consider participating in a support group (in person or online) or connecting with other families in similar situations.

Whenever possible, try to reduce daily stressors for the entire family with clear planning, scheduling, and teamwork.

Having a sibling with a chronic illness and frequent appointments can be stressful and create tension. Make alone time for siblings with parents and caregivers. Some families even consider utilizing respite care.

Develop consistency in routines for siblings:

• Where will he or she go if sibling is admitted to the hospital or has a medical appointment?
• What can he or she expect during sibling’s hospitalizations?
• How can he/she stay connected with their caregiver?

Consider family counseling. Psychotherapy can often improve the coping skills of all family members and create a more neutral environment for everyone to express their thoughts.

• If you are interested in pursuing individual or family counseling, talk to your psychosocial team at Children’s Hospital Colorado or your primary care doctor, consult with your state psychological association, or call your insurance company for recommendations.

Support from caregivers is a key protective factor for children dealing with medical problems. However, if parents are experiencing depressive or anxiety symptoms, they have greater difficulty supporting their child’s coping and adjustment. Parents experiencing these symptoms should consider behavioral health treatment to support their functioning. Talk with your primary care doctor or the psychosocial team members on your child’s medical team for recommendations about how to get the support you need.

Additional resources

For siblings:

• Sibling Support Project: Sibshops

For patients:

• Digging Deep

Family Resource Assistance

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.

Check out our Parent Toolkit to get more resources for maximizing your child’s health.