E-mail, texting and gaming may be unhealthy for most children but for those who are critically ill in hospital, they provide a welcome distraction, writes Sharon Dempsey
For the thousands of chronically ill children confined to hospital wards every year, computer technology is providing a means of communication which is enhancing their self-esteem, helping them tolerate treatment and advancing their recovery.
Research carried out by Prof Jane Grimson and Paula Hicks of the Centre for Health Informatics, Department of Computer Science, Trinity College Dublin (TCD), and colleagues in the Children's Research Centre, TCD has led to the creation of an online community which connects previously isolated children to their friends and family.
The two closely related projects, Áit Eile (Another World) and Solas, have established a virtual community for chronically ill children with the objective of connecting them to the outside world and enhancing their psychological wellbeing.
Áit Eile began six years ago with initial funding from the Information Society Commission through the Department of Health and Children. Solas has been a more recent undertaking aimed at more isolated children who have perhaps had bone marrow transplants or are receiving treatment for severe burns and are at risk of infection.
The project aims to develop a secure online environment for children to assist them to cope with the medical and emotional challenges of their health conditions. This can include intra-hospital, hospital-to-hospital, school-to-hospital, hospital-to-school, home-to-hospital and home-to-home communication.
As well as providing contact with friends and family, the portals also offer games, creative activities and quizzes. The computers are based in hospital school rooms and use is supervised by the hospital teacher.
Solas provides each child with their own laptop to prevent infections and their use is unsupervised with parents approving contacts.
Grimson is delighted with the outcome of the projects. "We have established a virtual community for chronically ill children with the objective of reducing their sense of isolation. They are provided with access to e-mail, MSN texting, video conferencing with school mates and potentially with their families.
"The idea was to reduce the sense of isolation of chronically ill children through distraction and communication. We have achieved those objectives and improved their psychological wellbeing," she says.
"We are now looking at other target groups such as dialysis patients who spend several hours, three to four days a week, connected to a machine," she says.
Hospitals with Áit Eile access include National Children's Hospital, Tallaght, Our Lady's Hospital for Sick Children, Crumlin, Cork University Hospital, Temple Street Children's Hospital, National Rehabilitation Hospital, Beaumont Hospital, University Hospital Galway, Sligo General Hospital, Our Lady of Lourdes Hospital, Drogheda and Scoil an Spioraid Naoimh, Cork. Cappagh Hospital and Waterford will be coming onstream shortly.
While Grimson does not claim that the children's recovery is directly improved by the computer access, she does believe the psychosocial benefits enhance the child's ability to cope with their condition.
"The psychological benefits are clear and the children tolerate treatment a little better," she says.
A further benefit of the programme was to provide children with a continuity of support from health professionals. As Grimson explains: "We also found one side benefit for children with brain injuries who have to be transferred for rehabilitation to somewhere else - [ they] are able to be introduced to staff with video conferencing and when they move to a new place they can chat back to the old staff."
Hospitals can be tedious places to spend a day let alone long periods of time. For the 20 per cent of children and teenagers living with chronic illness, hospitals can represent a place of resented medical intervention, painful procedures and periods of lengthy separation from their friends. Gaming enables them to interact and compete equally with their peers and experience movement and mobility which are sometimes impaired by their condition.
Dr Arun Mathews, national director of research and medical education for the Apogee Medical Group in the US, has been involved with Hope, the Hospital-based Pediatric Online Environment network which promotes digital technology as a means for children to escape the suffering of their condition and the boredom of hospitalisation.
"Children coping with chronic illness are heroes," says Mathews. "Unfortunately, sometimes they don't realise this. Gaming empowers children, allowing them to inhabit, in the virtual realm, bodies and health denied to them 'offline' by way of illness. Let them be leaders of armies, sports heroes and secret agents," he says.
Through clinical trials, Hope aims to prove that online gaming communities can reduce depression for children and young people spending periods of time in hospital, reduce perceived pain and enhance the quality of life of young people through peer contact.
"There is very little that can take away from the seriousness of childhood illness," says Mathews. "Interactive digital entertainment can help alleviate the misery of a hospital stay, either by providing a stimulating distraction or allowing children of like-minded interests to play together. These experiences need not necessarily be 'directly relevant' or 'educational' in order to be effective," he says.
Studies have proved that gaming can decrease anxiety before surgery and enhance the coping ability of the patient.
Dr Hunter Hofmann, a psychologist working at the University of Washington Human Interface Technology Lab, heads a project looking into the use of a 3D virtual environment called SnoWorld. They are investigating its effectiveness as an additional treatment for burn patients undergoing dressing changes. So far results have been promising.
In Northern Ireland, on arrival at the paediatric oncology ward, at the Royal Hospital for Sick Children in Belfast, visitors are met with the sight of children gathered around a television, while they compete on the latest video game. Their bald heads, nausea and IV drip stands are temporarily forgotten as they are absorbed in the quest to gather enough points to reach the next level of the game.
Kim McDermott's son, Robert James, was diagnosed at the age of five with leukaemia. His treatment involved a year of intermittent chemotherapy which took place at the Royal Hospital for Sick Children, Belfast. During the treatment he spent most of his time playing video games. "He was addicted to the PlayStation but it took his mind of his treatment. What else was there for him to do? He couldn't play football or run around with his friends so he used his imagination through the video games," she says.
"Children with cancer don't have the strength and energy to be active. Video gaming gives them freedom to lose themselves in their imagination and a chance to forget about being hooked up to an IV drip stand," she adds.
Sharon Dempsey's book Extreme Parenting: Parenting Your Chronically ill Child will be published in March 2008 by Jessica Kingsley Publishers.