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2. Encourage medical adherence through activities and environment that foster
discussion, sharing of experience, and informal content delivery.
3. Support posttransplant patient's psychosocial adjustment to lifestyle changes by
creating a community.
This research project started in late August of 2006 and ran through the summer
of 2007 in collaboration with pediatric psychiatrists and medical staff in the pedi-
atric transplant program at Boston Children's Hospital. Posttransplant patients were
first referred to us by doctors based on their age (11-15) and health status. Those eli-
gible patients and their families were then contacted and invited to participate in the
project. Most participants used Zora from their homes (all over New England, and
some other further states) and at times, during hospitalizations (Bers et al., 2007;
Satoh et al., 2007; 2008).
Fifty-four patients were originally contacted through phone calls and mailings;
31 verbally agreed to participate and 25 returned the necessary consent and assent
forms. Of these 25, we could not provide Internet to 3 due to their remote locations.
Thus we worked with a total group of 22. Of the 22 patients, three never logged in
into Zora, so our user group was composed of 19 children; however, 22 returned
questionnaires. Forty-five percent of the participants were females and the average
age at the start of the program was 13.7 years. Participants engaged in weekly online
activities for the duration of the study. While they were free to log on at any time,
the group activities followed a semistructured curriculum aimed at sparking conver-
sations about transplant experiences by encouraging them to create virtual spaces
such as a Health Museum and a Pharmacy.
During the project, each user logged into Zora an average of 60 times and spent
an average of 39 h logged into the program. This represents almost 7 h more online
than we had anticipated, as we had planned weekly online activities for 32 h. Users
created a total of 4,027 objects and made 75 virtual houses. For example, they cre-
ated a Legislature House where they put recommendations for hospitals to ease the
stay of the patients, such as “soft pillows,” “beds with comfortable mattress pads
on them
especially in the cardiac cathlab, where you have to lay flat for 6 h,” and
suggestions for schools to ease transitions after prolonged hospitalizations, “so kids
don't have to tell stories so many times” (Bers et al., 2007).
During the course of the study, three individuals underwent cardiac retransplanta-
tion. Their participation from the hospital both before and after the transplant added
an extra dimension to group discussions. It also provided an opportunity for some
of the participants to meet for the first time face-to-face.
During interviews, users reported positively about their experience with the
project, especially about being able to meet other children who had received a
transplant as made evident by a feedback from a participant:
...
I believe that taking part in Zora did give me inspiration. I only had a liver transplant, and
I cannot have tunnel vision that there's only me, but there are a multitude of other kids that
have gone through similar experiences as myself. They inspired me to help educate others
about organ donation, because there are kids like us whose lives have been saved through
the gift of organ donation
