When one of Dave Auwerda's students was diagnosed with cancer last August, the high school history teacher jumped at the chance to get involved with @neWorld, an Internet-based learning community for children undergoing cancer treatment.
This, however, was not Auwerda’s first experience with severe childhood illness. In 2001, Auwerda lost his son to a brain tumor.
“One of the most profound things that I learned through my son’s battle is that medicine isn’t perfect,” says Auwerda, who teaches at Morris Community High School in Morris, Ill. “Medicine isn’t a science, it’s an art. @neWorld is part of that art. It’s an avenue for expression, for venting frustration or sharing joy. Talking about your feelings—being able to express joy, concern or other emotions—is, in my opinion, critical to the healing process.”
Led by the Crystal Lake, Ill.-based Leap of Faith Foundation (a non-profit organization created to support projects in social computing by integrating technology, information and social need), @neWorld uses the Internet as a community-building tool. It connects hospitals and schools to provide educational continuity for children during treatment. It also acts as a social support and a conduit to education, providing continuity to children at an age where peer-to-peer interaction is critically important.
In 2003, the foundation joined forces with the Ronald McDonald Children’s Hospital and school districts around the state to test the efficacy of @ne World in a pediatric environment.
“Children with cancer face myriad psychosocial challenges,” explains Barbara Rapchak, Leap of Faith’s chief executive officer. “Disruption of school and social activities during treatment and recovery are particularly troublesome, leading to a decline in school performance and decreased self-esteem.”
Plugging the educational gap, @neWorld helps children stay connected to family, classmates and peers while remaining active participants in their social community.
Reading, Writing and Recovery
That connection is vital to student progress. “What I’m hearing from the kids is that they really love @ne World,” says Richard Taylor, coordinator and teacher with the Reading, Writing and Recovery School Program at Ronald McDonald Children’s Hospital. He has been active with the @ne World project for about two and a half years. “All the student feedback is very positive. They have fun and there are games as well as educational programs. We have one young lady, for example, who managed to figure out how to use the camera on her computer without even being told how to do it.”
Taylor coordinates a range of educational programs within the hospital, and he works with physicians, teachers, school districts and others to ensure that the treatment process minimally disrupts each child’s education.
“Even though a child is going through treatment, he or she can still function as a human being and needs to keep up with schoolwork,” he notes. “One of the reasons why I am here is that we see the need for children to be educated while they are hospitalized.”
Before the emergence of facilities like @neWorld, children received tutoring only from the school district, provided they met the state or school guidelines for home-tutoring.
“There is no unity on this issue,” Taylor explains. “States vary on this whole idea of being away from school. There are schools in which the child has to be away for 30 consecutive school days before the school district, or their state board of education, says that they have to provide tutoring. Here in Illinois, that number is 10 school days.”
Since @ne World is always available, it can accommodate the child’s health status rather than the teacher’s schedule. This can be a big plus for large school districts where tutoring resources are stretched across a large number of students.
Children that have suffered chronic illness need to be reintroduced to school life slowly, and @ne World continues to act as a bridge during this period.
“If we just plop them back into the school setting—even though the kids would love it because they’re full of energy and want to get back with their friends—it might impede their health,” Taylor says. “@ne World helps ease that process because they’re already online with their friends and teachers, and they’re keeping up as much as possible with their school work.”
The Virtual Classroom
Patients log on to @ne World through a Mood-A-Rator feature, which tailors the design of the site to their state of mind. From there, they can set preferences for shared content; invite friends, family and peers to join them online; or be matched with a Big Brother or Big Sister.
The Activity Zones section of the site accommodates multiple user groups using customized interfaces that enable common functionalities to be easily accessed by all group members. The School Zone, for example, provides user-specific school links, along with access to the @neWorld classroom, library and e-books. The Health Zone includes a kid-friendly dictionary, FAQ and health tips. Throughout, an interactive agent helps the kids use the site and adds another level of social support.
The @ne World community provides a private, secure environment for instant messaging, file sharing, e-mail, bulletin boards and e-cards. Children can even create their own home pages to share with invited guests.
While all users use the same basic interface to enter the site, the specific feature set is tailored differently to each user type. For example, only teachers see the tools used to create and upload class information and assignments, even though these are accessed within the same School Zone section of the site that is available to all users.
The project’s design goal was to create a user-centric architecture and interface to foster an internal locus of control for sick children, in order to enable personalization and scalability.
@neWorld’s delivery platform runs on Sony VAIO notebooks: small, light and powerful computers with built-in Web cam, sound and wireless capabilities. Besides the VAIO’s functionality, its weight and size make it the perfect choice for children who may be unable to lug around a big computer.
Schools can deliver curriculum content on a child-by-child basis via a file upload feature that allows teachers to post assignments and other curriculum materials online. To supplement material provided by the schools, @neWorld carries educational content from individual education, as well as public institutions like NASA and the Chicago Historical Society.
The @neWorld Web site, recent winner of a World Wide Web Health Award, is currently seeking a Phase III partner to act as gatekeeper and launch the program on a wider scale. The organization is coordinating with the Lance Armstrong Foundation, Ulman Cancer Fund and National Childhood Cancer Foundation as its search continues.
Auwerda of Morris Community High School says that life experiences have shown him the benefits of a program like @ne World.
“After I lost my son, one of the best therapies for me was being able to communicate my thoughts and fears to friends, families, and even total strangers who have experienced the same trials that my wife and I have gone through,” he says. “It’s a way to release fear and to open up.”
According to Auwerda, although the benefits of @ne World may be subjective in nature and may be played down by the medical community, systems like @neWorld function as a form of “alternative medicine” that can supplement conventional treatments.
“@ne World offers those opportunities to patients,” he adds. “It gives them a forum to express their joys, concerns and dreams with others who can relate to them. By sharing experiences, the anguish and grief of the process are somewhat lessened. It’s a positive way for people to connect and extend friendship and warmth to those suffering from cancer.”
The @ne World Web site operates on a standard Microsoft Web server platform.
Software components of the site include an SQL Server 7.0 database with a library of custom stored procedures, Microsoft Active Server Pages scripting, Windows 2000, and an upload utility that enables file uploads from patients and teachers. The site also uses a digital certificate for secure sockets layer security.
Patients use a Sony VAIO PictureBook notebook computer to access the site through a standard Internet connection. Running on the Windows XP operating system, the VAIO includes a digital camera that supports @ne World’s Web cam feature.
For users accessing @ne World with their own computers, the site is compatible with any system running Internet Explorer 5.0 or later. Additional software supporting multimedia features of the site are Microsoft Agent technology and Macromedia Flash plug-in, version 6 or later.
AOL Instant Messenger software is provided to allow instant messaging.