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Coping with your child's serious illness A nurse's experience from both sides

THE BALTIMORE EVENING SUN

BARBARA DAILEY has spent a lot of time around sick children -- her own and other people's.

She knows the heartache and the uncertainty of a child's chronic illness. She knows the confusion of differing diagnoses. She knows the threat of disability and the fear of death. She knows the questions that plague parents caught in a whirl of sick children, well children, busy doctors, harried nurses and well-meaning friends.

As a mother, Barbara Dailey has asked those questions.

As a pediatric oncology nurse, she has answered them.

Dailey, who is studying for a master's degree in nursing management at the Johns Hopkins School of Nursing, has put the knowledge gleaned from her personal and professional experiences in a book that she hopes will help other parents cope with their children's serious illnesses.

"Your Child's Recovery, A Parent's Guide for the Child with a Life-Threatening Illness" is a straightforward presentation intended to help families understand a child's illness and treatment, and convey that understanding to the child. The book also deals with disciplining an ill child, caring for siblings, coping with intensive care and preparing a child to go home from the hospital and return to school.

Although Dailey, who lives in Finksburg, originally planned the book for parents of children with cancer, she decided to broaden it for families of all children needing acute care. It is, she says, "an optimistic approach to life-threatening illness . . . for parents of children who are going to recover."

She knows that the parents' role is vital to a child's recovery. And she knows, too, that with demanding medical care, nursing shortages and abbreviated hospital stays, parents sometimes do not get the attention they need when their children are ill.

Soon after receiving a nursing degree from the University of Maryland in 1985, Dailey, 28, began caring for children with cancer at Johns Hopkins Hospital. While working from 7 p.m. to 7 a.m., Dailey recalls "so many midnight conversations with parents" about a child's care and condition. "A lot came to their minds when they tried to relax."

Dailey found her work "really satisfying personally and professionally. I loved working with the families. You really become a friend," she says.

But after about 18 months in pediatric oncology, Dailey gave up full-time clinical nursing because her older daughter, Shannon, was often sick. She returned to nursing part-time while working on a childhood cancer screening program at Hopkins, and is now employed in the School of Public Health while finishing her master's. While she was away from nursing, and after her second child, Jessica, developed meningitis at 3 weeks of age, Dailey went to work on her book.

Her daughters, ages 6 and 3, have an undiagnosed ailment that causes them difficulties with their immune systems, which cannot fight certain illnesses.

Her children, therefore, suffer more colds, fevers and lip blisters than others. Because these ailments are often contagious, the children must often stay home from school or day care. While working, Dailey frequently had to call in sick to care for her own children.

"It is not generally life-threatening," says Dailey of her children's illness. "It is a chronic thing," she says. She's at the pediatrician's office so often she feels the staff is like a second family. And it is there that Dailey, the nurse, becomes Dailey, the mom.

"When my child is sick, I'm at the pediatrician's asking those same questions [that she answers for others].

Dailey says that parents are clearly the best advocates for their ,, children and that the parental role in a child's care is seen as ever-more important. The parent, says Dailey, often acts as a go-between -- explaining medical procedures and prognoses to the child and relating a child's background, previous health care and emotional needs to doctors and nurses.

In the book, Dailey outlines three stages that parents go through when dealing with professionals caring for their children:

* Naive Trusting: "Family members may initially assume the care will be a cooperative effort . . . They may assume that the professionals' view of what is best for the child will be the same as the family's."

* Disenchantment: "If there is a lack of understanding between the health care team and the child and family, the family may become dissatisfied with the care. Frustration and fear may ultimately be expressed as anger . . ."

* Guarded Alliance: "As continuous care for the child becomes necessary, the family may begin to re-establish a sense of trust with members of the health care team by acknowledging both the strengths and limitations of specific care providers. Family members may begin to feel more comfortable . . ." she writes.

Parents often move to disenchantment or alliance and then revert, Dailey says, but as a child's care progresses, "they get more comfortable about what they know and what they need to know and do."

Trust in the people caring for their children is what parents need most, says Dailey. And the way to come to an informed trust is by questioning and talking to doctors and nurses and sharing with them a patient's and a family's needs, she says.

"There's going to be conflict of interest [between parents and medical staff] and conflict of values," she says.

While most doctors and nurses are well-intentioned about educating parents and including them in care, "I'm not sure that always happens . . . there's not always time," she says.

Coping tips

Parents of seriously ill children are balancing many interests: caring for the sick, while holding together the family and the rest of their lives. Here are some suggestions from Barbara Dailey on how to cope with this situation:

* Keep communication open. Encourage the sick child to talk and then listen carefully. "It's important to let your child know you are listening," says Dailey.

It's also important to talk openly with the people responsible for your child's care and to get them to talk to you.

"It is part of their job to explain your child's condition," Dailey writes. "Don't feel ashamed to say 'I don't know what that means.' If the health professionals seem rushed, wait for a quieter moment, but be sure to make your needs known before they leave the room."

* Parents should remember that they need support. Don't be afraid to ask for help, says Dailey. "It can be a sign of strength." Parents often need someone to do household chores, to care for other children, to sit with the sick child. "Parents need time to replenish their energy."

* Parents need to educate themselves about their child's illness and about how much they can participate in his medical care. They also need to educate their other children:

"Education and information will form special ties with the sick child," who may need to talk about his illness and may become quite knowledgeable about medical procedures.

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