Dr. Eduardo Pérez-Bercoff, parent of a child with cancer, tells us more about the
Caroline and Christer project that teletransports children in the hospital to their own
environment: school, kindergarten or home.
The aim of the project Caroline and Christer, that started in Sweden in 1997, is to
support children undergoing long hospital treatment through visual communication by
computer in order to help them keep in touch with their ordinary environment, i.e. their
school, kindergarten or home. These contacts are important because hospitalised children
easily develop behavioural problems due to the long stay in an unfamiliar environment.
Also when treatment takes place at home, in very many cases children lose touch with their
peers as a result of the preventive quarantine against infections [1-4]. For this reason
we started the project Caroline and Christer, that "teletransports" (through
visual communication by computer) the sick child to a familiar environment: their ordinary
school, kindergarten or home.
At the outset we had to decide which technology to employ. We chose a new one, based on a
special protocol (IT 124, which is the protocol used in ordinary telephone calls) even if
it was not the "best" from the point of view of the quality of sound and
picture. One reason for this choice was that the other technologies on the market (most of
them based on ISDN connection and using the IT 320 protocol) need a special interface card
that must be installed at the communication site. This installation takes two-ten weeks.
The other reason for our choice was the cost. An ISDN connection is quite expensive
because it requires us to install a new card each time we make a new connection to a
different place. Thus to connect another sick child with its school, home or kindergarten
always carries with it a new expense. Finally, the cost of an ISDN communication is twice
the price of a normal telephone call.
These considerations were reinforced by another factor: the flexibility the system offers
allowed us to develop our own pedagogical idea, which was to connect children with their
normal environment. Other projects teletransport sick children to other hospitals or
hospital schools. We don't believe that such teletransportation helps children to cope
with their "estrangement" (the feeling of being a stranger in a strange
place), nor that it helps them fight their isolation, since such a teletransportation
still keeps the sick child in a strange environment. Indeed the
"teletransported" child is "teletransported" from a physical strange
environment (the hospital where it is undergoing treatment) to an other strange
environment (the hospital to which it is connected, to which the child is no less a
stranger than to its “own” hospital).
Another consideration was that we wanted to use the healthy part
that each child has in order to integrate them with society. By bringing together sick
children suffering from similar conditions, we would, on the contrary, create a community
that is based on the sick part of the child.
We admit that it is important for children to be aware that they are sick and that their
experience can be useful in helping others (as is the case in associations like
Barncancerfonden in Sweden and other ICCCPO members). But we assumed that it is even more
important that they should become aware that real life is the community where they live
with other "healthy children". Our intention was, as we said, to use the healthy
part they still have in order to reintegrate them in a life with other children not
suffering from serious illness or injuries, thus to reconnect them with their former world
and old friends.
Today there is also a new type of communication based wholly on use of the Internet. The
inconvenient aspect for us was that we know that not every family has an Internet
connection, which is the necessary condition to make this kind of connection possible. And
to obtain an Internet connection may be too expensive for a family subject to the extra
expense that the treatment of a sick child already entails.
Through our choice of technology, we can immediately connect a child with its school, home
or kindergarten as long as there is a phone jack in these places. This flexibility allowed
us to make 30 connections from September 1997 until May 1998, covering the whole of
Sweden, from the city of Trelleborg in the extreme south to the city of Övertorneĺ north
of the Arctic Circle. But the most interesting connection was made on May 12, 1998,
between the University Hospital of Huddinge (Stockholm) and the city of Reykjavik in
Iceland. On this occasion we connected a four-year-old girl, suffering from leukaemia, and
her mother to her brothers in Iceland. By this means we "teletransported" for
the first time in the world a patient to her home abroad. This was possible thanks to the
fact we chose a flexible system, demanding only a simple connection modem to modem
connection using the telephone protocol IT 124.
Nevertheless, even if easily established, this connection demanded
collaboration between the personnel of the project Caroline and Christer in Sweden and the
personnel of the Styrktarfélag Krabbameinssjúkra Barna (Icelandic Childhood Cancer
Parent Organisation).
Before going to Iceland we needed to discuss the standards to be used in communication,
the computer equipment and so on. As we concluded that the best thing to do was to take
with us to Iceland the project's own equipment, we contacted Icelandair in order to ask
them to subsidise the excess weight of about 33kg. Icelandair agreed to waive
charges for the extra baggage, and we were also given a special cheap ticket. (We needed
to go in person in order to instruct the personnel of Styrktarfélag Krabbameinssjúkra
Barna and the child's family in the use of the equipment.)
This experiment is still on going, and we have seen that it was an important one, not only for the child but also for the mother and the brothers living in Iceland. We "brought them together", something that a year ago seemed if not absolutely impossible, at least very difficult. This experience has proven that "telepresence " produces a chain of good effects. In fact it has improved not only the mother's state of mind (who suffered from the separation from her other four children), but also the psychological condition of the sick child, who missed her brothers, and especially the oldest (twelve-year-old) sister.
In brief, even if only as a telepresence, the presence of the whole
family on the screen helped this child to endure their absence in at least two ways.
Directly, by putting her in touch with her brothers, indirectly, by also improving her
mother's condition, because she is the direct support this sick child has. Finally, the
project also helped the children in the home country, because they also suffer from their
mother's and sister's absence.
On the basis of this experience, the directors of the project Caroline and Christer and
the Styrktarfélag Krabbameinssjúkra Barna decided to establish an organised Cupertino
between them. The fact is that Iceland sends patients to the Huddinge University Hospital
to undergo bone marrow transplants and to the Östra Hospital in Göteborg to undergo
heart transplants. And as the Östra Hospital is part of the project Caroline and
Christer, the project can easily assist Icelandic patients undergoing heart transplants in
the University Hospital Salghrenska -Östra. As we agreed on May 14, Styrktarfélag
Krabbameinssjúkra Barna should be responsible for the maintenance of the equipment that
the project Caroline and Christer left in Iceland as well as for moving it between the
different places and homes in Iceland. Project Caroline and Christer should be
responsible, in Sweden, for the connection at the indicated hospitals. Finally, even
though Styrktarfélag Krabbameinssjúkra Barna is an association for parents of children
with cancer, it was agreed that support should be given to all children undergoing long
treatments in Sweden whatever the kind of condition they suffer from.
Since for most European countries a high number of immigrants are living abroad, and since
special treatment abroad should become a normal feature in the European Union, we
concluded that we need to develop a standard common to all European hospitals and schools,
in order to allow them to immediately establish visual communication through the computer
between hospitals, homes, other countries, kindergarten and ordinary schools like that
which we have just established between Iceland and Sweden. Such a connection must become a
normal feature of the treatment of children at European hospitals.
Project Caroline and Christer is now trying, in Cupertino with
Styrktarfélag Krabbameinssjúkra Barna, to find an even better and more flexible
technology that can be used at once over all Europe, and eventually indeed, the whole
world. By finding such a technology, it should be possible to help all children undergoing
long treatment by teletransporting them "home" or to their ordinary school or
kindergarten immediately and independently of where they are undergoing treatment.
Project Caroline and Christer hopes also that the collaboration it initiated with
Styrktarfélag Krabbameinssjúkra Barna will be extended to all members of ICCCPO.
Dr. Eduardo Pérez-Bercoff
Project manager at the Department of Tele-informatica at the Royal Institute of Technology
of Sweden and research fellow at the Department of Philosophy of the University of
Stockholm.
References
1. Pérez-Bercoff, E., O. Björk, and P. Ljungman, Social integration of children
suffering from cancer. An existentalist approach. Report on the project n° 327 of
the General Heritage Foundation of Sweden. 1996, Stockholm: Department of Philosophy.
University of Stockholm. 84.
2. Pérez-Bercoff, E., Paideia y oncología, in A saúde como desafio ético, G.
Caponi, S. Caponi, and M.T. Leopardi, Editors. 1995, Sociedade de Estudios em Filosofia e
Saúde: Florionópolis. p. 73-86.
3. Pérez-Bercoff, E., La comprehensión del nińo enfermo en tanto ser social. 1996,
Stockholm: Department of Philosophy. University of Stockholm.
4. Pérez-Bercoff, E., O. Björk, and P. Ljungman. El Modelo de Estocolmo- The Stockholm
Model (meeting abstract). in 1as. Jornadas internacionales de atención multidisciplinar
al nińo con cáncer. April 23-25, 1993. Valencia.