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At St. Jude Children’s Research Hospital, nurses are conducting research to improve patient care, eliminate suffering and foster hope. The Nursing Research projects help patients sustain themselves during treatment so that they can withstand its rigors.
Actigraphs—they’re cool; they’re sleek; they give children superhuman powers….Well, that’s what some kids want to believe when they wear the devices during a patient fatigue project at St. Jude Children’s Research Hospital.
Resembling slim, black watches, actigraphs measure activity levels. But sometimes children imagine that they do much, much more. One boy wanted to participate in the study because the watch resembled equipment worn by the Mighty Morphin’ Power Rangers. “Whenever he felt that he needed extra protection, he held it up in front of him,” says Pamela Hinds, RN, PhD, director of St. Jude Nursing Research.
Another patient questioned whether the actigraph did more than record movement. “When I wear this watch can you tell when I’ve been bad? Because if you can, then I’ll take it off just before I plan to be bad,” he warned.
Hinds laughs when she recalls some of the conversations she has had with children participating in Nursing Research projects. But the studies themselves are serious. For the past 18 years, Hinds and her colleagues have been seeking innovative ways to improve patients’ quality of life, to relieve their symptoms and to foster hope. “These are not studies that are going to lead to cures,” Hinds explains. “They’re going to contribute to cures. They’re going to help patients sustain themselves during treatment so that they can withstand the rigors of treatment.”
Different ways of doing science
When Hinds arrived at St. Jude in 1985, few people had heard of her field. “A nurse? Doing research?” scoffed the skeptics.
“There are different ways of doing science,” Hinds responded.
Even the Institutional Review Board was wary when Hinds proposed her first project, a study about hope. But when the protocol began, the response was overwhelming. “I had people knocking on my door and saying, ‘Are you the nurse who’s studying hope? I want you to interview my child,’” recalls Hinds. “Or I’d open the door to find an adolescent with an arm around another patient saying, ‘You need to talk with him about hope.’ Physicians were also referring kids to the study. It was huge.”
That successful project was followed by dozens of other studies. As a result of information gleaned from those protocols, many positive changes occurred in patient care at hospitals around the country. For instance, St. Jude nursing researchers created new methods for administering platelets, collecting certain blood samples and measuring patient pain and fatigue.
Too tired to smile
Research questions often emerge as a result of problems encountered by clinicians, patients or families. When the researchers asked patients to list troublesome symptoms, they expected that pain would be first, followed by nausea, hair loss and loneliness. But the children overwhelmingly cited fatigue as the most debilitating problem. “I’m so tired that I can’t even smile,” they would say. “I’m so tired that even if my best friend travels hours and hours to see me, I can’t talk to her.”
Those comments prompted Hinds and her team to begin studying fatigue and sleep. “We want to do whatever we can to help patients sleep so that they can have the growth, repair and healing that sleep promotes,” explains Jami Gattuso, RN, MSN, a Nursing Research specialist who is working on the “Sleep, Fatigue and Dexamethasone” project.
A backbone of leukemia treatment, the drug dexamethasone often induces sleeplessness in children who take it. St. Jude nurse researchers are asking some children with acute lymphoblastic leukemia to wear actigraphs for 10 days—five days before and five days during administration of the drug. A computer chip in the actigraph records the children’s activity levels.
The patients and their parents also keep diaries detailing the children’s activities, moods and fatigue levels. Those diaries help researchers explain movements that appear in the actigraph data. Frequent blood tests help researchers determine how each patient metabolizes the dexamathasone. “If we find that there is an actual change in sleep patterns, then that may indicate that we need to administer the drug differently,” says Hinds.
When Blaine Conway of Missouri takes dexamethasone, he sleeps fitfully, if at all. “When he’s taking dex, it affects our whole family,” says Robin Conway. “When I take him to school, I say, ‘We’re a dex family this week. Blaine was on dex the week after school started, and he fell asleep in class. That is so unlike him. He’s very active, but he was sleep deprived from the night before.”
When a child is running around the house at 3 a.m., the parent suffers, too. Exhausted parents might be more apt to make mistakes when they are caring for sick children. Because the parents’ quality of life affects the patients, Hinds, nurse educator Jeri Tidwell, RN, MSN, and the Nursing Research staff are planning a new study that embraces parental sleep and fatigue.
A related project is exploring whether mild exercise will affect the fatigue and sleep levels of inpatients. Researchers also record the number of times staff members enter and exit patient rooms at night. “Several years ago we did an observational study and found that the number of entries and exits to patient rooms at night was sometimes as high as 38,” says Gattuso. “We want to make the environment even more conducive to healing.” The researchers are interested in exploring ways to create fewer interruptions while providing the same level of care.
More quality to life
The nurse researchers are also involved in projects that study the impact of treatment on children’s lives. One such study evaluates the effectiveness of a drug called Procrit (epoetin alfa), which is used to treat fatigue associated with cancer. Many of the hospital’s protocols, or scientific treatment plans, also feature quality of life objectives created by Hinds and her staff. If the researchers determine that the quality of life plummets at a specific point in treatment, they can create intervention plans to prevent or alleviate the problems.
Robin Conway understands the importance of such research to children such as 6-year-old Blaine. “It’s so important to improve the quality of life for these kids,” she says. “This treatment has taken three years of Blaine’s life. Anything that can improve the lives of kids during treatment would be a good thing.”
Glenda Kinnebrew’s son Bryan has participated in one of the Nursing Research studies. The 15-year-old from Louisiana and his mom are thankful that the researchers address quality-of-life issues. “It’s great that St. Jude tries to make things easier on us,” says Glenda. “Leukemia is such a traumatic illness, and it affects the total family and their lives. The studies may not help Bryan, but they may help other children in the long run, so we’re willing to do them.”
Listening to parents
Because they realize that not all children survive treatment, Hinds and her staff have conducted four studies addressing end-of-life issues. “It’s critically important for parents to know that they have been good parents when their children are dying,” says Hinds. “How the parents survive that time and how they perceive themselves as parents will mark the rest of their lives. We need to do all that we can to learn their definition of being good parents and to help them achieve it.”
Nursing researchers asked parents to help them identify the symptoms that children are most likely to display the last week of life. Thirty-three symptoms were pinpointed as a result of the study. A new protocol will expand on that topic, examining how parents deal with end-of-life symptoms and the types of information and support they receive or need during that time.
Other studies have addressed ways that health care providers can help parents make end-of-life decisions. In one study, parents of patients who had died explained the kinds of decisions they made, how they reached them and who helped them make those decisions.
“Of course, we only talked with parents who had indicated an interest in participating in such a study,” says Gattuso. “When you hear a family member tell you about the last day of their child’s life, you think, ‘I’m not worthy to hear this.’ It is such a privilege to do research with these children and their families. These parents opened up and told us so many things that were extremely valuable and that will help us immeasurably.”
Hope is here
A multidisciplinary team of St. Jude staff members are using much of the data obtained from Nursing Research studies to create ways to foster hope in patients. “Hope is what St. Jude is all about and what it was founded on,” says Gattuso, “so it’s very important that we promote hopefulness in a therapeutic way.”
The Hope Research Translation Team has reviewed the available research about hopefulness. They have talked to staff, patients and families about the topic, and have created several projects to help promote hope. St. Jude Chaplain Brent Powell created the Hope Hotline; parents can call this phone number 24 hours a day to hear a message of hope and to leave requests for prayer or further contact. Other team members are creating educational flyers and Parent Handbook inserts about hope. The team plans to build Internet pages to further encourage hope in patients and families.
Hinds sees the Hope Research Translation Project as a healthy and natural outgrowth of the work she and her colleagues have been doing for years.
“Parents have told us that they recognize that not all children can get cured, but that they still need to have hope,” explains Hinds. “The parents know that ‘hope’ is not a promise of a cure. But it’s a promise that we will go through this with them, and a promise that we won’t abandon them, even if cure becomes impossible.
“And that’s what hope is all about.”
Reprinted from Promise magazine, winter 2003