Kids can need intensive health care at home after they have been in the hospital for many different reasons. Medical equipment and devices can:
In each case, it's vital that parents, siblings, and other family members learn about the medical devices and equipment that the kids they love depend on.
During the transition from the hospital to home health care, families will have a support network to lean on, including a team of medical professionals — such as doctors, nurses, therapists, home health aides, and equipment suppliers.
At many hospitals, a staff social worker can help coordinate this team. The social worker also may be able to help arrange home nursing and respiratory services, medical follow-up, and emotional support.
The process of getting comfortable with your child's home health care begins at the hospital. Learn from the medical staff by closely observing how they take care of your child and how they operate the necessary equipment.
Be sure to ask questions about anything you don't understand. Ask if you can start practicing in the hospital so you are comfortable by the time you go home. Consider talking with families whose children require similar medical equipment or levels of care.
Family caregivers should be prepared for and well-informed about the care a child requires. Caregivers will need to know how each machine works, how to troubleshoot, and how to perform preventive maintenance and any backup procedures.
Here are some factors to consider as you prepare for home health care:
Family members should learn how to use and maintain all medical equipment. They also should:
The specific skills needed will depend on your child's condition. The nurses and doctors can help you understand what you may need to know, and might even have training dolls to help you practice different procedures.
The hospital social worker can help families arrange for nurses or aides to come into the home to assist with care, if necessary. They also can help determine any special qualifications home-care workers might need to have.
In general, home caregivers should understand how to:
You may want to prepare notes on your child's status and require each nursing shift to do the same. That way, early signs of trouble can be recognized and medical help summoned quickly. Consider keeping a patient journal near your child's bed so that nurses and family members can communicate about various issues.
Various medical equipment can be required for different medical conditions, but there is some commonly used equipment for when kids need assistance to breathe, eat, and perform vital bodily functions, like urinating and stooling.
Sometimes kids cannot swallow food or need nutrition assistance. To get this nutrition into the body, some methods use the child's gastrointestinal (GI) tract (these are called enteral feeds) and some go directly into the bloodstream (these are called parenteral feeds).
The health care team will provide specific information about how to handle different situations involving the equipment, such as displacement or clogging of tubes.
It's important to be able to find help and support, whether it's from the medical professionals involved in your child's care, or friends, family, or peers in similar situations.
The medical care responsibilities of home health care can feel overwhelming. And the demands of home care can easily make parents feel isolated.
Whether you need emotional support or help managing the household duties, don't hesitate to consult your health care provider or hospital about resources in your community. And try to get some time to yourself, even if it is half of an hour for coffee with a friend, it can give you a needed break.
Reviewed by: Larissa Hirsch, MD
Date reviewed: March 2011
|Family Voices This website brings together families who have children with special health needs.|
|National Dissemination Center for Children with Disabilities (NICHCY) NICHCY is the national information and referral center that provides information on disabilities and disability-related issues for families, educators, and other professionals.|
|DisabilityResources.org This website includes resources for people with disabilities.|
|WheelchairNet This is an online resource for the people who use wheelchairs and those interested in them.|
|Office of Special Education and Rehabilitative Services, U.S. Department of Education This Web site provides information and lists programs dedicated to educating children with special needs.|
|KidNeeds.com This website is for children with special needs, their parents, and other caregivers and contains information and health supplies.|
|Emergency Information Form for Children with Special Needs The American Academy of Pediatrics (AAP) has a form for all the vital information about the child's condition, and the doctors and other key contacts in case of an emergency. It's a good idea to post it near the phone, in the car, and in a prominent common area in the house.|
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|Managing Your Medical Care Visit our center on managing your medical care for advice on how to get involved in taking charge of your health and choosing the right health care providers.|
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