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several mentors, older teenagers who had had a transplant were identified
as potential mentors for the Zora community and were invited to join. For
example, when participants discussed online their worries about going to col-
lege and not having their mothers around to help them to remember to take
their medications, we asked one of the mentors, a college student with a
transplant, to come online to talk about his own experience. The long-terms
plan is to have the participants, as they become older, to assume the role of
mentors.
(3)
Diversity
. The diversity among this project's participants is found in terms of
the type of organ they received, the types of medical situations that lead them to
require an organ transplant, the time since transplant, and the severity of their
condition. There were 13 participants from the heart transplant program, 3 from
liver, and 6 from renal. Diversity is also present based on their location: 12 par-
ticipants were from Massachusetts, 1 from Florida, 1 from Maine, 3 from New
Hampshire, 2 from New York, and 3 from Rhode Island. They all had in com-
mon that they underwent the transplant procedure and received posttransplant
follow-up treatment at Children's Hospital Boston. Regardless of their origi-
nal ailment or organ received, they all share the experience of going through
organ transplantation and thus were all committed to a life-long regimen of
medications and follow-up invasive interventions.
(4)
Project scale
. Although 22 posttransplant patients signed consent forms, only19
used Zora and half of them participated on a regular basis. Although at the
beginning of the project, scale was not an issue and children were happy to
meet for the first time other posttransplant children, as the project evolved,
children wanted to have more participants, as it was difficult to have syn-
chronous activities and conversations. Throughout the study, we had to hold
our weekly online meetings at two different times to accommodate different
participants' schedules. In addition, the voluntary nature of the project meant
that we could not enforce regular attendance. Thus there might be as few
as one or two participants attending planned activities. However, participants
would be online at other times to work on individual projects. Due to the “con-
stant on” nature of this project, participants were welcomed to sign on at any
time; however, our data showed that in many cases, a participant who logs on
and finds that only one or two other members are on would sign off. This
may be due to the lack of a minimum critical mass to sustain participants'
engagement. Other researchers (e.g., Preece, 2000) have shared similar expe-
riences for the need to have a minimum critical mass when building a social
network or a virtual community. To increase the probability of having a mini-
mum critical mass to sustain a discourse, we are increasing the overall user or
participant pool by bringing on board a new site, Tufts Floating Hospital for
Children.
(5)
Types of contacts with participants
. Besides regular online contact with the reg-
ular participants, we have made home visits to a few local participants' homes
to gain an understanding of the environment and context in which Zora was
being used. We also arranged to meet some patients at the time of their regular
