Support Benefits Entire Family : Counseling Given to Sick Children

When you’re 10 and people in white gowns and masks are constantly jabbing you with horse-size needles, it’s hard to feel grateful that these doctors and nurses are trying to save your life.

OK, you have leukemia. But it’s summer, and you’re angry because you’d rather be outside playing baseball with friends.

Then one day, David Young walks into your room at Childrens Hospital of Orange County. He lets you talk freely about your frustration over falling behind in school, how the chemotherapy and radiation make you feel queasy and the awful pain every time one of those needles is thrust into your body for a spinal tap or to draw bone marrow.

“Barnie, if you let me, I can help you,” he says. You, Barnie Hardaway, have your doubts. But you’re just a fourth-grader at Fullerton Seventh-day Adventist School. Young’s a psychologist who says he specializes in making chronically ill children feel better.

He talks soothingly about controlling your pain. The computer screen your body is wired to shows that by thinking about pleasant things in painful situations you can cause the tidal wave fear lines on the screen to flow away. Computers don’t lie.

A year’s elapsed, and you’re now in remission. Still, you have to come back to the hospital in Orange for five-day stays once a month for continuing treatment. But you’ve learned to control the treatment’s pain. And at every visit Young is there to reinforce your mental skills and to counsel you on the problems leukemia is causing you with your family, friends or in school.

Barnie, who lives in Buena Park, is a beneficiary of the emerging field of medical psychology. Unlike traditional clinical psychologists who generally work with people who are physically sound but have emotional problems, medical clinical psychologists specialize in helping mentally stable children with chronic physical ailments adjust to their condition and treatments.

Statistics show that, at any given time, one in 10 children in the country suffers from a physical disorder lasting more than three months, said Lynda Helfend, a Laguna Hills medical psychologist and a former president of the Assn. for the Care of Children’s Health.

Chronic illness among people 18 and under is also stressful for the patients’ families, Helfend said. Marriages are strained or end in divorce because of personal and financial sacrifices. Brothers and sisters often grow resentful over parental attention focused on ill siblings, Helfend said.

Most medical psychologists work out of hospitals, Helfend said. Childrens Hospital has the largest staff of medical psychologists in Orange County, according to area health care experts.

Half of the 3,000 youngsters admitted annually to Childrens Hospital are critically ill with cancer, diabetes, cystic fibrosis and other medical problems, said Frank Carden, director of Childrens’ medical psychology program.

However, Carden and his staff of nine medical psychologists see about 15%, or 225, of these critically ill children in order to concentrate on those youngsters who can benefit most.

“Being in a hospital is not considered part of normal childhood development,” Carden said. “When you’re 4, you want to be up and around. We try to normalize the hospital experience for the child so that it can fit both his development needs and what his doctor wants him to do.”

To add normalcy to an ill child’s hospitalization, along with attempting to ease his fears about falling behind in school, Childrens Hospital opened its own school two years ago under the guidance of medical psychologist Christine Chapman.

Nineteen of Orange County’s 28 school districts accept credit for the work done by their students in the school, Chapman said. She added that it is the only in-hospital school in the county that is not part of a psychiatric facility.

Carden said: “A child with diabetes will be on a special diet for his entire life. A diabetic’s supposed to have three meals and two or three snacks at a given time and of a certain quantity. This eating pattern isn’t consistent with the behavior of an adolescent, who wants to eat when his friends do, such as after dances.

“Not following his diet causes an adolescent’s diabetes to get out of control. We have to bring the diabetic, his family and doctor together for some problem solving to control his eating habits.”

When both parents are employed, Carden said, they are shown how to balance job demands with their child’s recurring need for transportation to the doctor’s office and scheduled medications. Parents also receive counseling in coping with the financial and personal strains caused by their child’s illness.

Childrens Hospital psychologists charge $75 an hour, Carden said. However, he added, “no one is turned away because of ability to pay.”

Childrens Hospital’s medical psychologists continue to see 60% of their patients on an outpatient basis after they’re discharged. UCI Medical Center in Orange also has an outpatient medical psychology program for chronically ill children, a spokeswoman said.

There are no precise figures on the number of medical psychologists in the county who work outside hospitals, said Daun Martin, president of the Orange County Psychological Assn.

However, other psychologists believe the number in private practice is less than a dozen. Among them is Helfend. She uses various methods to treat children and their families.

In family therapy, Helfend attempts to foster better communications and relations among houshold members. “Parents of a chronically ill child are frequently reluctant to discipline him; they either feel guilty that they’re somehow responsible for giving birth to a less-than-perfect child, or they fear that the child is too frail.

“They end up losing control of the chronically ill child--and then the rest of their children,” Helfend said. “The children end up ruling the roost. They’ll constantly be arguing among themselves over things like what to watch on TV.

“One of the first things I tell parents with children like this is: ‘This is really obnoxious behavior; you need to stop it.’ ”

This approach is being used by Helfend with an Orange County family whose 7-year-old daughter has a mild form of spina bifida, a spinal cord birth defect that left her slightly paralyzed. After several operations, the youngster today is able to live an otherwise normal life, except that she lacks feeling in her left leg and is incontinent. The latter problem, her parents said, prevents her from freely visiting friends’ homes and leads to taunts from other children about her occasional body odor.

The girl’s parents, who asked that their names not be used, acknowledged in an interview at their home that when their daughter was an infant, they were so concerned about her numerous operations and medical care that this unintentionally led to her manipulating her medical problems to dominate their lives.

She also had negatively influenced their other child, a 9-year-old girl, who they said had grown rebellious out of resentment of special attention her sister’s disability had received. “Everybody’s tempers were at the boiling point, and the relationship between the girls was getting worse,” the father said.

When the family’s therapy began six months ago, Helfend said, she treated the entire family together to re-establish the parents’ control over their daughters. “Dr. Helfend helped my wife and me realize that we had inconsistent rules for the girls from day to day,” the father said. “She showed us how to set up a reward system using money and other things to improve the girls’ behavior.”

Helfend is now treating the sisters alone in sessions using play therapy to resolve sibling rivalry. The girls, in an interview, said they often used to yell at and hit each other before learning from Helfend that by speaking in a normal tone and compromising over what to watch on TV, for example, they could resolve disputes much more easily.

Helfend’s therapy sessions for a chronically ill child and his or her family entail a minimum of one hour a week over three months. The longest she’s ever seen a patient is one year. Because of the financial burdens faced by families of chronically ill children, Helfend said, her fees are negotiable.

Based on the family’s ability to pay, Helfend said, her hourly rates range from $30 to $80. She said that private insurance usually pays 50% to 80% of this.