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Research Behind the CD

The development of the CD-ROM was funded by a Small Business Innovation Research Grant from the National Cancer Institute, National Institutes of Health.

Small Business Innovation Research Grants allow small private companies like The Degge Group to develop and produce needed products that would be too costly to fund completely in the private sector. The NCI funds these projects to make materials available for relatively small populations, like children with malignancies.

In August of 1996 there were no commercial interactive CD-ROM products for children with leukemia and their families. We wanted to create such a product using graphics, music, still photographs, animation and videos to present the content. We also wanted the CD-ROM to be comprehensive in scope, engaging, and developmentally appropriate for preschool and school-age children as well as their parents.

Although our goal was to meet the learning needs of children ages 4-11, we are also aware that this product is likely to be of interest to siblings, peers who want a better idea of what their friends are going through, and school personnel -including school nurses. Older children have expressed interest in the content although characters and some formatting were specifically geared toward a younger age group. Such a product could also be helpful in debriefing children who are many years from the end of treatment and who have vague but perhaps inaccurate recollections of what occurred.

An NIH SBIR grant has 3 phases:

  • Phase I lasts 6 months and involves a needs assessment and development of a simple prototype.
  • Phase II lasts 2 years and includes the development of a final product after evaluation by the target population.
  • Phase III is fully funded by the small business that has been awarded the Phase I and Phase II grants. In this phase, the product is made available on the market and commercialized.

In Phase I, we used focus groups to determine what content to include in the CD-ROM and how to present it. The fourteen 7-11 year-olds with leukemia expressed a desire for a wide range of information on their condition.

Parents showed a limited understanding of clinical trials and had difficulty acquiring information about leukemia. This was made worse by the speed with which consent was needed to enter their children on clinical trials. The twenty-four health care providers indicated that it was very important to include information on the disease itself, testing, treatment, and the hospital; and, somewhat important to include information on clinical trials and assent for 7-11 year-olds.

The storyboard was then developed for a few portions of the outlined program. A group of 20 children tested the program and stayed on task except when text was not accompanied by voice-over. They had some trouble with navigation but were not inhibited in using the program. They also requested more videos.

Parents felt the content areas addressed those they suggested in the focus groups and were enthusiastic in their response. Health care providers agreed the program was entertaining and would recommend it to their patients and families.

Phase II began with an effort to see if the format developed in Phase I would also work with 4-6 year olds. Six healthy preschool children used the prototype. Their feedback led to a simplification of the design. The format was changed from a "space hospital" -- with several floors and rooms on each floor-- to a planet with six major areas to explore.

We then conducted focus groups with 4-6 year-olds with leukemia, their parents and health care providers. Seven 4-6 year-olds showed us the wide range of understanding of this age group regarding the disease, its treatment, and procedures. They wanted to know about the color, taste, and feel of medicines they receive.

We were interested to know whether children in this age group prefer to see animations of children having procedures done or pictures of real children. We showed them a cartoon of a bear and photos of real children getting a shot. The majority of the children preferred to see pictures of real children undergoing treatments rather than the cartoon. Photos of real children seem to validate the pain and fear that subjects have experienced. As one girl said " I want to see the tears." This validates the professional opinions of many developmental psychologists as well.

The eight parents of 4-6 year-olds with leukemia wanted information at varying levels of complexity depending on where their children were in treatment. They also identified interactive methods as their children's preferred method of learning.

We then did structured 20-40 minute phone interviews with eight geographically diverse health care providers specializing in oncology. They felt it was most important to include the following in a program for 4-6 year-olds: what causes or doesn't cause leukemia, what leukemia is, and information about procedures.

In the next stage, one of the six sections of the prototype CD-ROM was fully developed and then tested with 7 children with leukemia. They spontaneously visited nearly all content areas that were active and enjoyed the program. Some children actually took their hands off the mouse while they listened to the longer audio sections.

After each section of script was written, fourteen reviewers, including: pediatric oncology specialists, pharmacists, developmental psychologists, pharmacosociologists, multimedia designers and an adolescent with leukemia, edited the content for accuracy, developmental appropriateness, and readability. The content for the program addresses the needs expressed by all of the focus groups.

The last phase of this study was the formal evaluation phase. Based on this evaluation, final changes to the CD-ROM were made. The CD-ROM is now available to the public.