Becoming your Child’s Health Care Advocate

Being your Child’s Health Care Advocate

It is a daunting task to deal with chronic illnesses, especially when your child is the one that suffers.  As a parent, on top of all that you do; it is your job to raise the voice of the voiceless, to speak for your child.  If you do not speak for them, then who will? List below are a few tips on how to become an effective advocate for your child.
1.) Become empowered and know everything about your child’s disease.  The more you know, the better your child’s care can be.  Be careful the information you gain is from trusted sights as well.  For instance, a simple understanding of what blood tests measure might give you insights on how to better care for your child at home.  Recognizing low iron levels might allow you to make dietary changes at home instead of shots or pharmaceutical remedies.

2.) Do not be afraid to ask your doctor questions.  Always go into your appointments prepared.  Your discussions and the answers to your questions can spark new dialogue, but you need to be prepared before you begin.  I take a legal pad loaded with questions for my physician.  He has embraced my desire for knowledge and I have never felt inferior for any question asked.  In most cases he takes additional to ensure I completely understand everything.  Never leave your appointment feeling ‘I should have asked something.’

I also bring a list of questions for the entire health care team.  Social workers, nutritionists, nurses and nurse practitioners all have insights because they work with families more closely than the physicians themselves.  Take advantage of their resources.

3.) Build relationships with everyone who cares for your child.  Getting to know each person on your child’s healthcare team will pay dividends in the long run.  Why?  When problems arise you know exactly who to talk to.  If you need help with a 504 plan (school plan for special needs children) then calling the nursing line is not as efficient as knowing your social worker.  You will find that they all have a profound willingness to help.  Allow them to help you in the most productive ways.

4.) Talk to as many people as possible.  Your child’s condition is normally not unique; there is someone who has walked in your shoes.  Seek out other parents, and develop relationships across a variety of symptoms and conditions.  I have never found a parent who was unwilling to help.

5.) Participate in your child’s curative organization and healthcare collaboration.  Both of these organizations have patients and parents who share the same passion as you.  You will make valuable connections and most importantly you will not feel alone.  It is also important to include your child in decision making with his or her illness.  It is easy to feel isolated when first diagnosed.  Finding those common bonds with other patients will help alleviate the stress of isolation.

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