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Children in Hospice

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Children in Hospice
Katrina Williams
RES/110
April 26, 2012
Professor James Lazos

Children in Hospice
Research suggests that every year there are between 100,000 to 150,000 children born in the United States with a genetic disorder or defect. This represents approximately 20% of infant deaths each year. However, many of these children live to age well beyond the expectation, and some are enrolled in hospice. According to Armstrong-Daily and Zarbock (2001), “The concept of hospice today is applied to patients who are traveling through the final stages of their lives-in effect seeking shelter and comfort.” Hence, the main focus of this program is to prepare families for the death of a loved one. Although accepting these services is optional, families suddenly faced with the harsh reality that adulthood or even adolescence is not in their child’s future are in need of support services that offer much more than the comfort of a shoulder to cry on. There is an urgent need for organizations that strive to assist parents in helping the child to reach his or her full potential while encouraging loved ones to celebrate and cherish the time spent without the constant reminder that death is near.
Caring for a child with a disability can be challenging. Immediately upon the child’s initial discharge from the hospital, life changes drastically. Parents are instantly bombarded with phone call from social workers, medical supply companies, and nursing staff for updates about the child’s condition and progress. Because the child requires constant medical attention, it is essential to begin searching for specialists to assist with care and preventive services. If the child is covered by more than one insurance company, it is important to ensure that all medical providers accept both because out of pocket expenses can be costly. There is time that should be set

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