Each focus group meeting followed a set format, used identical questions to stimulate discussion and was facilitated by the same investigator (KM). Sessions were audio-taped, and discussion lasted until everyone indicated that everything that needed to be said had been said.
Names of potential focus group participants were forwarded to the investigators by local paediatricians. Eligible subjects were parents of children diagnosed with cancer in northwestern Ontario who were receiving or had completed treatment in Toronto or Hamilton. Although all five local paediatricians agreed to participate in identifying eligible families, all referrals came from three specialists who see the majority of local paediatric oncology patients. Continue reading
The Thunder Bay Regional Hospital in Thunder Bay, Ontario is not a tertiary site for paediatric oncology care. Local paediatricians follow protocols as initiated by paediatric oncologists at one of the tertiary teaching hospital facilities in southern Ontario. Historically, the referring Thunder Bay paediatrician has taken over from the family physician in providing the local care of the child. Continue reading
Learning that a child has cancer or that a malignancy is a strong possibility comes as an extreme shock to the whole family. The list of problems is long, including a change in family dynamics, financial concerns, marital discord and employment difficulties. Fritz et al reported that, while long term emotional and social problems were relatively rare in survivors of childhood cancer, communication patterns within the family were the most predictive indicators of psychosocial outcome, and that the severity of the medical situation was not found to be a good predictor of psychosocial adaptation. Continue reading
Furthermore, while individual care providers were spoken of very highly, there was never any indication that parents were aware of a team of professionals being there for them. There was an earnest desire on the part of most, if not all, to be able to pass on their learning and experience to others, and to spare those coming after them from some of the frustrations and anxieties that they had encountered. Continue reading
In terms of training for the parents, the call was for information about what parents needed to know in order to navigate and negotiate the first few days and weeks in the larger centre, and how to make the return to the home hospital. Equally important was the call for ways in which these parents could connect with each other without having to depend on the accidental meeting a few weeks or months into the process. Continue reading