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Patient Advocacy for Children in Hospitals

When a child requires an emergency room visit, inpatient procedure, or other hospitalization, parents rely on medical professionals and hospital staff to give appropriate and effective care. Often, when a child has special needs or ongoing medical conditions, parents will provide specific information to hospital staff and will make sure there is someone with their child around the clock who can alert each new shift about the differences they may find in treating their child.

Families of children with disabilities, developmental delays, or chronic health conditions often develop strategies to advocate for and accommodate their children's special needs at home, in school and neighborhood programs. They create recommendations and checklists to share via internet resources, nationwide advocacy associations and local parent groups.

In hospital environments, families may rely too much on the expertise and competence of medical staff. Only when obvious mistakes have harmed a child does a parent evaluate what might have been early warning signs that basic safety precautions have failed. In some cases, safety precautions or the procedure itself may be so complicated that mistakes are more likely. In others, a change in shift, misread or miswritten doctor's orders may endanger a pediatric patient. Recently, doctors, hospitals and patients have become more aware of conditions that indirectly cause mistakes to be made, and are instituting checklist procedures that are meant to reduce the likelihood of those that adversely affect up to 98,000 hospitalized children and adults each year.

If your son or daughter has a diagnosis that makes it more likely that he or she will be hospitalized, and especially if they are already scheduled for an inpatient stay, it is important that you become educated about the specific dangers of hospitalization, surgical procedures or other medical interventions for all children with the same diagnosis. It is also recommended that we discover the most common dangers mainstream children encounter when hospitalized.

To learn more about preparing for a child's hospitalization, and improving the safety rating of the clinic or hospital where your child will stay, search reliable internet resources and build parent group libraries with books like: Safe Patients, Smart Hospitals: How One Doctor's Checklist Can Help Us Change Health Care from the Inside Out; Josie's Story: A Mother's Inspiring Crusade to Make Medical Care Safe; The Checklist Manifesto: How to Get Things Right and Madeline.

A.A.P. Emergency Info Form PDF - Children with Special Health Care Needs
http://bit.ly/9sBU5D

Many health professionals ignorant about Diabetes care in the hospital, outpatient and inpatient surgery
http://www.youtube.com/watch?v=ed8qpMVw0Oo

Life and Death: Thoughts on Jahi McMath
http://kimchilatkes.com/2014/01/08/life-and-death-thoughts-on-jahi-mcmath/

Teddy Bear Hospital Events for Children
http://www.bellaonline.com/articles/art66880.asp

January 2012: Hospital 'water wall' fountain linked to Legionnaires’ disease outbreak
http://tinyurl.com/WtrWllLgnrsDsOutbrk

Dennis and Kimberly Quaid - Heparin Overdose 12 Day-old Twins
The Quaid Foundation has merged with TMIT
http://www.safetyleaders.org/quaid/

The Steps to Changing Pediatricians - Julia Roberts
http://supportforspecialneeds.com/2012/04/04/the-steps-to-changing-pediatricians/

Diabetes Care in the Hospital: It Ain’t Pretty
http://www.diabetesmine.com/2013/06/diabetes-care-in-the-hospital-it-aint-pretty.html

A refuge for parents caring for kids in hospital
http://bloom-parentingkidswithdisabilities.blogspot.ca/2014/06/a-refuge-for-parents-caring-for-kids-in.html

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