Crumlin hospital is pioneering Solas, a wireless communication service that links chronically ill children with the outside world, writes Fiona Tyrrell
An innovative hospital project which aims to give seriously ill children and adolescents in protective isolation the chance to interact with the outside world via computer is about to commence at Our Lady's Hospital for Sick Children Crumlin.
Researchers at Trinity College Dublin (TCD) found that chronically ill children, who regularly have to spend weeks or even months in protective isolation, experience high levels of loneliness and boredom in addition to the trauma and pain associated with their illness.
A new project called Solas aims to tackle these issues with the help of information communications technology.
The project has just been approved and three portals are now being installed for the use of hospitalised children at the national paediatrics haematology/oncology and bone marrow transplant centre at Crumlin.
The Solas portal is essentially a mobile wireless unit which can be moved from room to room, giving children access to a secure online space where they can communicate with friends, family and even their schoolmates via videolink, e-mail, live chat and sms texting.
The system also provides children with educational and creative tools which allow them to compose music, create pieces of art, listen to audio books, play games and even have their own blog space.
The goal is to give chronically ill children an opportunity for greater interaction with the outside world and to promote the children's "connectedness" with familiar people and places, according to Paula Hicks from TCD's centre for health informatics.
Solas was originally a collaboration between the centre for health informatics and Media Lab Europe (which has since closed), and is funded by the Higher Education Authority. TCD's children's research centre and Crumlin hospital were also involved in the project.
The project will allow children and adolescents to link up with the outside world via a protected format and on a structured basis, says Sharon Hayden, assistant director of nursing at Crumlin. She says the hospital saw the project as a fantastic opportunity to alleviate boredom and bring a touch of normality into the lives of children who have to spend weeks or even months in protective isolation.
"'Normal' is not having your parents around you the whole time," she explains.
According to Hicks, research has shown that once a child can share their experiences with others and keep their life and relationships as normal as possible while in hospital, they have better adherence to treatment and have better psychosocial well-being.
A study conducted by the Trinity team during a needs assessment for the project found that patients at the bone marrow transplant unit in Crumlin experienced loneliness, boredom and isolation.
One parent told the researchers how her son would transform into a different child during his time on the ward, "switching off" from everything around him and just waiting for the time to pass and for the treatment to be over.
Other studies have shown that children with a chronic condition have smaller peer networks and experience more stress than healthy children.
Losing friends and having difficulty making new friendships were key issues identified by patients and their parents at the bone marrow unit. Being in hospital for long periods of time, missing out on school, feeling too unwell to contact friends and the risk of infection are some of the reasons chronically ill children lose their friends, according to Hicks.
For those from outside the Dublin area, there is even less possibility of friends being able to visit them while they are in hospital, she adds.
One parent at the unit described how their child expressed the feeling that everyone had forgotten her.
Some children told the researchers they would not like their friends to visit because they felt embarrassed about how they looked and embarrassed about being visited by peers in the hospital environment.
The use of the internet to develop and maintain relationships is particularly attractive for sick children, Hicks explains. While geographical location can threaten face-to-face friendships, online friendships can always be maintained. They are also more likely to be based on shared interests.
Officially, mobile phones are prohibited on the ward because they sometimes interfere with hospital equipment. This, according to Hicks, reinforces the sense of isolation of both the child and the parents and makes contact with those outside hospital difficult.
Most children and parents, however, admitted to using mobile phones from time to time. For the children, not being able to use mobile phones meant they didn't get to speak to family members at home as they were unable to go to the ward pay phone because they were too ill or were in isolation.
Maintaining links with a child's mainstream school is regarded as crucial for the long-term psychosocial well-being of sick children. Many of the patients in the unit at Crumlin had missed out on long periods of school due to their illness. While the child's school would send them course work, many found it difficult to concentrate.
Through Solas, children can link to the mainstream school via video or e-mail, enabling them to participate in a lesson or discussion at class or simply stay in touch with school friends. A folder in the Solas portal will allow access to schoolwork provided by the teacher.
A key aim of the project is to allow usage at any time without supervision, so access to the world wide web is not included on the system for security reasons.
The next phase, according to Hicks, is to incorporate multimedia format medical information into the Solas system so children can access child-friendly and visual explanations of common procedures and other medical information.