Chronic and Disabling Conditions

Children with Chronic and Disabling Conditions

by Marianne Cook, LICSW, Clinician, Harvard University Mental Health Service

Chronic and disabling conditions can take a heavy emotional toll on children and their families. Children diagnosed with chronic conditions often feel anger and sadness about their situation, as well as anxiety about what is going to happen to them. Parents may experience these same emotions as well as grief at the child's loss of a healthy childhood and helplessness at their inability to cure the child and take away pain or disability. Below are some tips for parents of children with chronic conditions to help the family cope with it.

  • Communicate honestly with your child about the illness. Keeping information from children usually increases their anxiety and makes it more difficult for them to adjust to the illness. If you need help finding age-appropriate ways to talk about the illness, consult with the staff at your child’s treatment center. Most treatment centers employ social workers or child life specialists whose job it is to help children understand and cope with their illness.
  • Acknowledge and validate feelings. Let your child know that strong feelings about the illness are understandable, including anger at the unfairness of it. Younger children may act out their feelings because they don’t yet know how to verbalize them; you can help your child express emotions through the creative arts or fantasy play. Be aware that some children may believe that they have done something bad to cause the illness. Reassure your child that nobody is at fault.
  • Maintain normal routines whenever possible. This includes setting limits and disciplining your child. Parents may feel inclined to overindulge or to ignore problem behavior because their child is ill, but children need structure for healthy emotional and psychological development.
  • Give your child opportunities to socialize with peers. Learning how to get along with others is a key part of childhood. If your child cannot attend school regularly because of medical treatments, look for social groups within the hospital or the community where your child can meet other children who are going through the same issues. If your child does attend school, you may need to work with the staff on helping classmates to understand the illness and accept your child.
  • Siblings of children with chronic conditions may experience guilt about being healthy or jealousy toward their ill sibling for taking up parents’ attention. Keep in mind that chronic conditions impact the entire family. Make time for other children in the family and consider setting them up with counselors or support groups if needed.
  • Adolescence is a time when children with chronic conditions often rebel against their medical regimen by not taking medication or ignoring risk factors. This is part of a teenager’s normal push for autonomy and self-determination—and teenagers with chronic conditions may be especially likely to push because they have grown up so dependent on their caretakers. It may be useful to get your teenager connected with other teens who have the illness so they can share ways to manage it.
  • Attend to your own needs. Taking care of a child with a chronic condition can be extremely stressful. Utilize supports in your community—friends, relatives, counselors, religious or spiritual groups, staff at your child’s treatment center, and/or other parents whose children have a chronic condition. You are not alone.

The information in the article above was drawn from the following sources:

Additional Sources of Information

Disclaimer: Material on the Project INTERFACE web site is intended as general information. It is not a recommendation for treatment, nor should it be considered medical or mental health advice. Project INTERFACE urges families to discuss all information and questions related to medical or mental health care with a health care professional.