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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. These may be translated from their original language to English, and certainly should be translated into the second languages spoken in the community if the resources are originally presented in English.
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. For instance, children with insulin dependent diabetes may be under the care of a doctor who has little or no experience with well patients with T1D, changing medication orders without consulting with parents or the child's endocrinologist. In many hospitals, 'frequent' B/G checks may mean once every four hours, when most of the fast, short-acting insulin starts working within fifteen minutes and is finished in three hours.
The very young, children with language delays, communication challenges, those who have been injured, and some who use augmentative communication devices, may not be understood or supported in the hospital. There may be short staffing situations, inadequate supervision, and use of restraints without permission in some hospitals. While we respect the work and expertise of hospital staff and medical professionals, parents often know their children best, and are valuable members of their son or daughter's team. If no checklist is in place for staff to use for all patients, the individualized one you create for your child can be an effective learning tool.
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
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Dennis and Kimberly Quaid - Heparin Overdose 12 Day-old Twins
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A refuge for parents caring for kids in hospital
Content copyright © 2014 by Pamela Wilson. All rights reserved.
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