Medical Home ABC's

Stories and Conversations

Partnering With Providers

Taking Care of Your Family

Finding Services

Health Information

Coordinating Your Child's Care

School Tools

Organizing Your Paperwork

Paying for Services

Transition

Family and Youth Leadership

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Health Information

Introduction

It is easy to feel confused and overwhelmed when you are trying to understand new or complicated health or developmental issues for your child. 

Learning as much as you can about your child's health and developmental issues will help you be a strong advocate for your child and an effective partner with your child's doctor and other health care providers. 

How Your Child's Doctor Can Help

Other Service Providers Who May Be Able to Help

Other Parents and Families Can Help

Finding Reliable Health Information

Internet Sources of Medical and Diagnosis-related Information

 

How Your Child's Doctor Can Help

• Ask your child's doctor or nurse to repeat or explain any words or things they said that you don't understand.
• Write down or ask your child's doctor or nurse to write down the exact name(s) of your child's diagnosis or possible diagnoses.  This will help you look for the right information on the internet, in books or when you talk with other people.
• Ask your child's health care providers for any written information, website links or other ways for you to learn more about what to expect and next steps you might take.
• Remember: your child's medical home doctor is there to help you understand the medical side of your child's needs.  You are not alone.  It is okay that you don't have instant medical expertise- you are already an expert on your child, her strengths and needs.   The health and medical piece will feel less overwhelming over time as you learn more.

Other Service Providers Who May Be Able to Help

• Health care and community service providers such as the local public health nurse, the early intervention family resources coordinator for children birth-to-three, your child's occupational therapist, physical therapist, speech therapist, nutritionist or others can help.
• Many communities have medical librarians whose job is to help both consumers and health care professionals find trustworthy health and medical information.  If a hospital near you is not on the list of medical libraries see if they have a library and if it is open to the public and unaffiliated health professionals.  Most public librarians are also happy to answer health questions.

  http://nnlm.gov/members/results.html?view=main&qid=114

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Other Parents and Families Can Help

• Local parent support groups, such as Parent to Parent, can match you with another parent who has been trained as a helping parent to provide information and emotional support.
• Family advocacy and information centers such as PAVE (Parents Are Vital in Education) can help you with special education-related questions.
• Parents you get to know whose children attend the same early intervention program, school, or after school activities can be sources of information and support.
• Members of diagnosis-based support groups, who you get to know in person or online through internet discussion groups such as CHADD (for Attention Deficit Hyperactivity Disorder) or FEAST (food allergy support) can also be very helpful.

Link to Family Support Directory Page

Finding Reliable Health Information

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• Brochure - 'How to Find Reliable Health Information'
• My Health Toolkit

Internet Sources of Medical and Diagnosis-related Information

The Diagnoses pages of this website have family-focused information and physician-focused information for 6 particular diagnoses:  Asthma, Autism, Attention Deficit Hyperactivity Disorder, Cerebral Palsy, Down Syndrome, and Low Birthweight/Prematurity. 

Remember, just because something is on the internet (or printed) doesn't mean it is true or reliable - read about how to tell whether the information you are reading is trustworthy in the Family Section of Search Strategies for Other Conditions which includes tips for finding and evaluating reliable health information.

Another great place to start is the National Libraries of Medicine website, www.medlineplus.org.  Information is selected by medical librarians who choose information items based on how reliable and easy to read it is. Medlineplus has information on more than 650 different conditions affecting children and adults.  The Topics section includes background information on the particular condition, current articles, types of treatments and more.  The Encyclopedia gives background information with pictures.  There is also are also interactive tutorials, a drug dictionary and a medical dictionary to look up all those latin and greek medical words!
Find the same in Spanish, at: http://medlineplus.gov/spanish

Rx Washington: This site is sponsored by the State of Washington to educate consumers about prescription drugs and may be of use to you when researching a medication prescribed by your physician. www.rx.wa.gov/

The Washington State Medical Home website has additional health information in the sections on Resource Weblinks and "Child Health Notes".

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