Information Technology Reference
In-Depth Information
hospital's clinical visits or while they were hospitalized for treatment. However,
depending on the time since transplant, the frequency of the participants' rou-
tine visits to the hospital varied; therefore we could not arrange to meet every
participant and their family. For those participants whom we could not visit
either at home or at the hospital, interviews were conducted over the phone. In
addition, users created a monthly newsletter,
Transplant Times
, that reported on
some of the key activities that took place on Zora. The newsletter was printed
and mailed to all participants, their families and hospital staff. At the end of the
year, we organized a Zora group who would represent the virtual community of
transplant patients at the hospital's annual fund raising walk. Five of the partici-
pants and their families joined for the walk which gave us, and them, the chance
to meet other face-to-face.
(6)
Assessment
. Data collection included automatically generated logs that pro-
vided qualitative and quantitative data of user's online activities, self-report
instruments, and semistructured interviews, as well as spontaneous feedback.
We collected three sets of data: (1) data pertaining to Zora use and participant
feedback through semistructured face-to-face or telephone interviews, as well
as Zora logs, and home visits to check for fidelity in the way the system was
used by the patients and the ways it was intended to be used; (2) data pertaining
to the positive development of youth through the use of technology collected
through questionnaires; and (3) data about patient's medical adherence and
medical history provided by parents, medical staff, and children's themselves.
(7)
Access environment
. The participants were expected to log online from their
computers in their homes. Since not every family had access to a computer suit-
able for using Zora, we provided computers to three families and also Internet
service to one family. During hospitalizations, patients were able to participate
from the hospital.
(8)
Institutional context of usage
. Participants were requested to sign a Code of
Conduct which outlines some basic rules of Internet behavior (such as not dis-
closing personal information online) prior to logging into Zora for the first time.
This was requested by the hospital IRB to ensure the safety of the participants.
The initial items on the Code of Conduct signed by the participants are created
by the researchers but once on Zora, we encouraged discussions about appropri-
ate and inappropriate behavior on Zora (such as resolving issues of participants
building on top of, or within someone else's “property” without notification).
Once consensus was reached as a community, new items were added to the
Code in the Zora world. The institutional complexity of hospitals and the inter-
disciplinarity of this work makes it difficult to be in full control of crafting an
innovative educational intervention that, although might not meet the scientific
review criteria of the medical field in terms of statistical significance of results,
shows clear qualitative signs of having a positive impact. For example, based
on feedback from participating children, parents, and medical staff, the CICU
Cardiac Clinical Research and Education Fund at Children's Hospital Boston
decided to continue funding the program as a free pilot clinical service, after
the NSF funding finished, while we secured new funding.
