Resources and information for parents of children with cancer . . . by parents of children with cancer.

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Kidz With Leukemia

A Review by the Ped-Onc Editor

My rating:

The Degge Group kindly sent me a copy of the CD ROM, Kidz With Leukemia. After reviewing the program, they said I could donate the disc to Children's Hospital in Denver. I thank them for this gracious offer.

Kidz With Leukemia is an interactive program designed primarily to teach young patients about leukemia. Adult and sibling concerns are also targeted in a few sections. Kidz interacts with all of these users in a serious but friendly way. While it is not possible to create a graphical interface and environment that will appeal to all children and adults, Kidz will probably appeal to many if not all users.

The different sections of the program explain the disease itself as well as the ramifications of treatment: the stay in the hospital, medical procedures and devices, necessary hygiene practices, good eating choices, controlling pain, and emotions and feelings. Each topic is covered employing one or more educational methods: written descriptions with graphics, interactive “click and see what happens” screens, slide shows, games to reinforce the newly learned facts, and movies.

In my opinion, the authors of Kidz With Leukemia attain their goal to produce a good educational tool for children with leukemia. The program is interesting and modern enough to keep young childrens’ attention. The information provided is accurate and age-appropriate (as far as I can tell).

What to expect when you open the program

On the first screen, you have a choice to enter the program as an age 4-6 or 7-11 child, or an adult. Once you choose your age and a screen name, you are “beamed up” to the space ship to be taken to Planet Leukator. In the main part of the program, there are six sections of information. Each section has facts on leukemia as well as short interactive games or activities which will reinforce the facts learned. The sections are: Space Mall, Fill and Fly, The Testing Center, The Movies, The Get Better Place, and Help Yourself. Some of the sub-topics can only be accessed if you enter the program as an older child, and some only as an adult.

On my first interaction with Kidz, I found it anti-intuitive as to which section covers which topic (e.g., what topics would be covered in a Space Mall, a Fill and Fly?). I quickly found that I preferred to use the site outline, which is readily accessible by clicking on the Map icon. The Map lists the subcategories of each section; these lists lend the titles meaning. With a little practice, you learn how to get where you want pretty quickly. (Remember, the program is written for kids, and while this-here adult had to think about how to get around, the kids will probably zip around without any problem.)

Content

Kidz does a good job explaining leukemia and its treatment to young children. The Degge Group states that the content was reviewed for accuracy by “pediatric oncology specialists, pharmacists, developmental psychologists, pharmacosociologists, multimedia designers and an adolescent with leukemia.” I am a veteran parent of a child with leukemia, and I found that the information in Kidz coincided with the information I received both from our own doctors and the many books I have read and Web sites I have visited. The information is not of the depth and scope that I, an adult, require, but as far as I can tell, the information is accurate and appropriate for the targeted youth age groups.

My kid favorites

I had fun in the kitchen (“Help Yourself,” the Food Issues section), opening all the doors on the refrigerator and cupboards just to see what would happen. A child probably would enjoy it too, while at the same time learning some of the foods to eat and which to avoid. I think the interactive “Bathroom” is a cute idea too, where young children find ways to prevent infections and about mouth care. I also spent some time coloring (“Help Yourself,” the Get Creative section). In the Get Creative area, children can also write in a journal. I liked The Movies, which has videos of real kids with leukemia. I had less fun in the Get Better Place and the Testing Center, since these were about staying in the hospital and tests, which as a parent I have seen too many times first hand. The clinical trials section in the Get Better Place is necessary and adequate for kids and, at the entry level, for adults.

The Space Mall was my second favorite place. This is kind of a hodgepodge of information: hats, tubes (about catheters), books, art gallery, and body shop. The body shop has a game on body parts and a video about a check-up, both of which I enjoyed, and I had fun putting hats on the Space Buddy.

My adult favorites

After I put on my own serious hat, I went to the outline to look for the adult-targeted information. Is there some real, in depth information for parents on Kidz? After a bit of searching, I found the parent sections in the Space Mall. Actually, just about all the serious, adult-level information is in the Space Mall, under “books.” I did like some of these areas, especially:

Know Your Medicines: This is a medicine database prepared by pediatric oncology experts and pharmacists. It’s pretty good. If a family owned the disc, the parents might prefer the CD ROM over printed (or Web site) versions of the same information. (Numerous versions of medicine databases are also readily available in books, the first of which comes to my mind being Childhood Leukemia by Nancy Keene, which I consider a necessity for parents of children with leukemia.)

Physician Data Query (PDQ): This is nice to have on the CD, and will be helpful for parents of newly diagnosed kids. However, PDQs are readily available on Internet sites using a quick web search.

Resource List with Internet links: I like this section, not so much for the sites it includes but for the “hot links”. I highly commend the authors of Kidz for sending users to a “hot” site where lists of urls can be constantly updated, both as addresses change and as new Web sites are published. What remains to be seen is how frequently they update the “hot links” on the Kidz Web site.

Frequently Asked Questions: Good FAQs as far as they go, but nothing earth shattering. Most of us find these out from our doctors. The FAQs are excellent, however, for parents of newly diagnosed kids.

Recommendations

The Kidz CD ROM is really quite good. I am amazed that anyone took the time and initiative to produce such an high-quality program targetted at such a (luckily) small population: young children with leukemia. I think that young children will actually like to explore the program, learning about their disease as they go. I do advise parents (or hospital staff) to sit down with their child (or patient) as they go through the program, both to supplement the information in Kidz and to answer questions as they come up.

It would be wonderful if all kids had access to this disc in the first days after diagnosis with leukemia. Probably the best place for Kidz is in pediatric oncology hospital libraries. Children later in treatment or even off-treatment would also benefit from the program.

Given the cost of Kidz, not every (or even very many) families of children with leukemia will be able to afford the disc for personal, home usage. (The family must already own a PC compatible Pentium computer: this fact alone crosses off a large percentage of the population.) This would be ideal, but it is probably unrealistic.

General Disclaimer

These pages are intended for informational purposes only and are not intended to render medical advice. The information provided on Ped Onc Resource Center should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you suspect your child has a health problem, you should consult your health care provider.

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