Empowerment


Learning effective coping strategies helps empower parents or caregivers of chronically ill children. The task of providing or coordinating care for a chronically ill child can take hours each week. When parents must also care for other family members, work and run a household, the task of finding information and deciding how best to advocate for their child can be overwhelming.

Here are some suggestions to help empower parents or caregivers so that they may better cope with ongoing stressors and lesson the pain and frequency of chronic sorrow.

  • Limit your time online. Spending countless hours searching questionable internet sites can be exhausting, frustrating, and a waste of time. Try to use a few trusted sites and limit your time each day. One valuable source is the Yellow Pages for Kids with Disabilities website. Visit the Resources page for a list of agencies and organizations.
  • Join support groups and network with other parents or caregivers. Ask for recommendations from medical professionals, educators, and social service agencies. (See the Resources list.)
  • Take advantage of the information resources available at many children’s hospitals. Often hospitals have libraries which families can use to gather information and perform research. Use the knowledge and skill of the library staff rather than trying to find answers on your own. This can save many hours of your time.
  • Exercise and keep yourself healthy. Make and keep regular healthcare appointments.
  • Do something fun for one hour each day.
  • Arrange for respite care. Long-term caregiving causes emotional stress and can have negative physical effects.  Remember that caregiving is not a “sprint,” but a “marathon.”