Although the need for skilled pediatric social workers is widely recognized, shrinking hospital budgets often prevent adequate staffing. If you bring your child to a children's hospital well staffed with social workers, child life specialists, and psychologists, consider yourself lucky. Sadly, millions of dollars are spent on technology, while programs that help people cope emotionally are often the first to be discarded. If your pediatric center offers no emotional support, explore the other methods described later in the chapter to get help.
Pediatric social workers usually have a masters degree in social work, with additional training in oncology and pediatrics. They serve as guides through unfamiliar territory by mediating between staff and families, helping with emotional or financial problems, locating resources, and easing the young patient back into school. Many social workers form close, long-lasting bonds with families, and continue to answer questions and provide support long after treatment ends.
On the day of Carl's diagnosis, we were introduced to a team whom we worked with for the next several years. The team included a primary nurse, a primary oncologist, a first-year resident, second-year resident, third-year resident, and our social worker. I remember that first day the social worker told us that she was there to help us with anything we needed, such as hospital problems, billing, insurance, emotional issues, or behavior issues. She said her job was to be there for us, and she was, whenever we needed her.
We went to a children's hospital that was renowned in the pediatric cancer field. The medical treatment was excellent, but psychosocial support was nonexistent. The day after diagnosis, we were interviewed for twenty minutes by a psychiatric resident, and that was it. I never met a social worker, and the physicians were so busy, they never asked anything other than medical questions. If I started crying, they usually left the room. I didn't know Candlelighters existed; I didn't know that there was a local support group; I didn't know that there was a summer camp for the kids. I felt totally isolated.
In addition to social workers, some hospitals have on-staff child life specialists, psychiatric nurses, psychiatrists, psychiatric residents, and psychologists who can help deal with problems while your child is an inpatient.
After Meagan's first bone marrow aspiration, which did not go well and was very painful for her, she stopped talking and she wouldn't even look at us. We couldn't comfort her in any of the normal ways; she didn't want to be held, read to, talked to, sung to. At the time this was more devastating than the leukemia. Any time somebody would come to the door, she would start shaking. Days into this, we asked, "Isn't there anybody here who helps kids who are feeling his way?" So they sent up a psychiatric nurse, who came once and really worked wonders. However, she never came back, so we made arrangements to see her occasionally on an out-patient basis. When we started getting Meagan anesthesia for her procedures, the withdrawal stopped, and she's a healthy and happy first-grader now.
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