The stress of a serious illness, chronic health condition or disability in a child often causes problems in a family. It is worse when each parent or adult caregiver attempts to deal with their own fears and frustrations related to the chronic health condition or disability alone and without support.
In some instances, parents become consumed with the care of their child with a chronic illness or disability, at the expense of nearly everything else in their lives. In these situations, they may find themselves almost constantly looking for new options, reading about alternative treatments, and thinking about the future. They may ask themselves questions such as:
- “Is there a better medication for my child?”
- “Is it worth getting another doctor’s opinion?”
- “Can I be doing more?”
Demands on the parent
Parents might feel that the demands upon them have no end (such as trips to the doctor’s office or preparation of special meals). Parents may feel constantly tired and never able to find energy to do anything else. Time spent with a spouse and one’s own personal interests and hobbies is often given up.
How families can thrive
However, families can also thrive as they embrace and love a child with a chronic illness or disability. A child with health problems may bring parents and other family members closer. Families—especially those who communicate openly—may be strengthened by experiences associated with managing their child’s health condition or disability. In many cases, the family’s management of a child’s chronic condition may provide them with a sense of cohesiveness, mission, mastery, and pride which builds the resiliency of the family.
Who can help
You should not expect or attempt to solve all family problems associated with your child’s illness or disability by yourself. It is important not to isolate yourself as a parent or caregiver of a child with a chronic health condition or disability.
Pediatricians, psychologists, social workers, family therapists, and parents of other children with chronic illnesses and disabilities are very important resources for helping to work through family problems. Ask for help.
Social networks can also be valuable sources of support for you in your community. Examples include condition specific support groups, faith based groups, extended family and friends.