Computer programs help children cope with chronic illness

A group headed by the man who created such classic family films as "E.T." and "Jurassic Park" has secured APA's help in building another screen attraction--interactive computer programs that help children cope with a serious or chronic illness.

Starbright Foundation, a Los Angeles­based nonprofit group chaired by film director Steven Spielberg, seeks psychologists' help in making sure its diverse electronic products meet the foundation's mission--improving the emotional resilience of children with such diseases as leukemia, juvenile diabetes and cystic fibrosis.

Starbright produces computer games and videos that teach children about their illnesses and offer suggestions on coping with such stressors as repeated hospitalizations, chronic pain or rigid treatment regimens. It also offers "Starbright World," a private online hospital-based network, including videoconferencing, chat and other interactive services that allow children to converse with and support their peers who are struggling with similar illnesses.

Starbright staff say psychologists can help enhance the foundation's already active product research-and-development efforts. Starbright conducts extensive studies, ranging from assessing the psychological needs of children with specific diseases to measuring the behavioral outcomes of patients who use Starbright programs. But the foundation wants to expand the network of researchers it regularly recruits for those studies, says Jordana Huchital, director of the foundation's health-care initiatives.

"By going to APA as an organization, rather than looking for experts on our own, we can more easily find someone who is regarded by his or her colleagues as one of the top people in the field," Huchital says.

Many ways to collaborate

APA members, particularly those in the Society for Pediatric Psychology (SPP), a section of the association's Div. 12 (Clinical) have agreed to help Starbright with such tasks as:

* Finding experts on the specific psychosocial experiences of children facing such diseases. Those experts can then help the foundation with product design. For example, Alexandra Quittner, PhD, a pediatric psychologist who counsels children with cystic fibrosis, recently advised Starbright on the appropriate content for an upcoming interactive program that deals with adherence to treatment for that disorder.

* Identifying the psychological outcomes the foundation wants to measure when it tests each new product. They may want to design studies that assess, for example, whether a Starbright CD-ROM on diabetes is truly encouraging children to comply with their diet restrictions and their schedule for measuring their blood sugar, Huchital says.

* Setting up an interdisciplinary peer-review panel to examine proposals for studying the therapeutic effectiveness of Starbright products. Psycho-logists, pediatric nurses and other health professionals on the panel will help Starbright select the best research proposals.

"Starbright is a very unique group because it really aspires to have a research-base on whatever it develops," says Maureen Black, PhD, SPP past president and a psychologist in the pediatrics department at the University of Maryland School of Medicine in Baltimore. "So it makes sense for pediatric psychologists, who also have a mission of helping children understand and cope with illness, to develop some long-term, organizational collaboration with the foundation."

The foundation has a staff of about 25 people, not including outside consultants. Spielberg serves as its chairman and Gen. H. Norman Schwarzkopf heads Starbright's fundraising arm. Its products include such hospital-based technologies as videoconferencing and connections that, in essence, provide young patients with an electronic support network. A child with leukemia can chat over a private network with another child diagnosed with the same disease, for example.

Starbright also produces and distributes videos that offer adolescents with serious health conditions advice on everything from communicating effectively with their doctors to surviving on hospital cafeteria food. And it offers a free CD-ROM game that challenges children with diabetes to score points by watching their diet, checking their blood-sugar levels and taking other behavioral steps that can help them better manage their disorder.

(The videoconferencing and private network connections are available at hospitals across the country. Information on obtaining the other products is available by contacting Starbright at 1990 South Bundy Drive, Suite 100, Los Angeles, CA 90025, (310) 442-1560, fax: (310) 442-1568, web site: www.starbright.org.)

Starbright staff have historically consulted with individual psychologists for help in developing or testing their products. For example, David Bearison, PhD, a New York City pediatric psychologist, and Ronald Brown, PhD, associate professor of psychiatry and pediatrics at Emory Medical University of South Carolina, are conducting case studies to determine the therapeutic effects of three Starbright interactive programs that provide children with age-appropriate medical information.

Through education, the programs aim to reduce children's anxiety about and increase their ability to cope with procedures that they are about to undergo, such as blood tests, bone marrow biopsies and spinal taps. Bearison and Brown are examining how the program helps the participating children comply with their treatment, cope with pain, understand their illness and communicate clearly with their physicians. Results will be used to improve or modify the content of the programs, Brown says.

But Starbright usually recruited those researchers through word-of-mouth and networking, Huchital says. Collaborating with psychologists on an organizational level will introduce Starbright staff to an expanded array of researchers and clinicians who can help the foundation with product research and development, she says. APA can connect Starbright with pediatric psychologists, as well as with other specialists that can help with the foundations endeavors. School psychologists, for example, could assist in the development of an educational video on returning to school after a long hospitalization, she says.

Initial steps

Starbright officials made the first step toward forging a formal, organizational relationship with APA last year by contacting then-APA President Martin E.P. Seligman, PhD. The foundation identified Seligman as an ideal person to approach because of his high-profile promotion of a concept he calls positive psychology--the therapeutic focus on people's emotional strengths rather than their weaknesses, Huchital says.

Starbright asked Seligman to organize a meeting between the foundation and SPP members at APA's Annual Convention last August. SPP and Starbright laid out their plans for collaboration at that meeting. And the society agreed to facilitate Starbright's interactions with other APA divisions and committees when necessary, Black says.

SPP members say they're impressed with Starbright's commitment to making sure its products provide some measurable education and self-efficacy--and not just entertainment--for ailing children.

"They are extremely open to and value psychologists' input," says Joseph Bush, PhD, who is associate dean and a faculty member in the clinical psychology program at the Fielding Institute in Santa Barbara and is a consultant for Starbright.

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