With a little help from my friends: experiences of building a virtual community for children with cancer

Abstract

Approximately 31% of children under 18 years of age have a chronic physical illness or condition. (Tak & McCubblin, 2002) This population, along with their families, has a range of medical, developmental, social, emotional and environmental needs (Grey & Sullivan-Bolyai, 1999). Spending a lifetime with a serious or chronic health condition can be traumatic and physically and emotionally painful. This is especially true when the individual enduring the condition is a child or adolescent. Children and adolescents with chronic illness are faced with a myriad of challenges that their healthy peers may never experience. They can have difficulty coping with the challenges of managing pain, adhering to treatment and sometimes undergoing invasive diagnostic and treatment procedures. In the case of more chronic conditions, children and adolescents may have frequent school absences and potential physical differences. The impact of hospitalization for treatment can add many other concerns for children and adolescents who are not just struggling with being displaced from their community but are also contending with a loss of control in almost all areas of their lives. These problems can hinder a child's treatment and recovery. (Boman & Bodegard, 2000), (Rode, Leask-Capitulo, Fishman, 1999) Enduring a chronic disease and its treatment can cause much disruption to schooling, and also to a child's family's social life and relationships. According to the Canadian Paediatric Society (2008), for adolescents, in particular, who are themselves striving for control over their lives and attempting to become increasingly independent from parents, the normal psychological and social changes are often delayed or altered due to chronic illness. (Canadian Paediatric Society, 2008) These issues are due in part to the reduction of developmentally normal activities such as school, sports and socializing which leads to a discrepancy between the physical and emotional development that can be a source of great stress for adolescents. (Blum, 1992) Addressing the specific needs of these young people through the use of virtual communities has been at the core of some of the research work currently being carried out at the Centre for Health Informatics, Trinity College Dublin (TCD) in collaboration with The National Paediatric Haematology/Oncology and Bone Marrow Transplant Centre, Our Lady's Children's Hospital, Dublin.