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Educational Information

Caregiver and Sibling Health

Caring for a child who has a serious illness is challenging for many families and can be difficult emotionally. This article has tips that may help you in dealing with these many issues: www.brennerchildrens.org/KidsHealth/Parents/Cancer-Center/Dealing-With-Feelings/Caring-for-a-Seriously-Ill-Child.htm

When you are caring for a child with medical complexity, it is important that you also take care of yourself. Here are a few tips on how to find general caregiver support: www.brennerchildrens.org/KidsHealth/Parents/Doctors-and-Hospitals/Caring-for-a-Seriously-or-Chronically-Ill-Child/Taking-Care-of-You-Support-for-Caregivers.htm

One way to find time to care for yourself as a caregiver is to utilize respite care. Information on what respite care entails and how to locate it in your area can be found here: www.brennerchildrens.org/KidsHealth/Parents/Cancer-Center/Dealing-With-Feelings/Finding-Respite-Care-for-Your-Child-With-Special-Needs.htm

As a parent, you may wonder how to help siblings of your child with special needs understand and cope. This article offers developmentally appropriate ways to communicate with and support all of your children: www.brennerchildrens.org/KidsHealth/Parents/Cerebral-Palsy-Center/Daily-Life/Caring-for-Siblings-of-Kids-With-Special-Needs.htm

Medical Support

Does your child need a tracheostomy? Hear from several families about their experience with a child who has a tracheostomy: www.brennerchildrens.org/KidsHealth/Parents/Doctors-and-Hospitals/Caring-for-a-Seriously-or-Chronically-Ill-Child/Tracheostomy-Parents-Talk-Video.htm

Does your child need a gastrostomy-tube (G-tube)? The following 2 links offer information about the procedure and a video about parents’ experiences with G-tubes:

Guidance and Support to Help You Manage Your Gastrostomy Tube (g-tube): www.appliedmedical.net/wp-content/uploads/2014/12/22355-AMT-Balloon-PatientEdBro1.pdf

Has your child been referred to occupational therapy or physical therapy? Here is information about what to expect, and the goals of these therapies:

www.brennerchildrens.org/KidsHealth/Parents/Cerebral-Palsy-Center/Managing-Health-Care/Occupational-Therapy.htm

www.brennerchildrens.org/KidsHealth/Parents/Cerebral-Palsy-Center/Managing-Health-Care/Physical-Therapy.htm

Choosing a Home Health Provider

You may need help at home to care for your child’s medical needs. These resource guides are meant to help you as you figure out how to navigate the home health care system.

Below is a link to helpful information from Brenner Children’s Hospital’s on how to manage home health nursing care: www.brennerchildrens.org/KidsHealth/Parents/Cancer-Center/Treatment-and-Prevention/Managing-Home-Health-Care.htm

We have put together a list of questions you might ask Home Health Nursing companies, nurses, or medical equipment companies before you choose them to provide services for your child. Questions to Ask (PDF)