While some would argue that shared care needs to be better matched and that communication needs to be improved considerably, others might argue that there will always be differences between large and small centres, and that the care providers need to put greater effort into preparing and assisting parents in making these necessary adjustments.
Finally, participants recognized that coping emotionally had been the most difficult aspect of their child’s illness. While the literature emphasizes the importance of focusing the treatment approach on the whole family when the identified patient is a child, few families experienced this holistic approach. Participants spoke of personal difficulties and the marvellous support of family, friends and other parents, and of the positive relationships with their family doctor, paediatrician or specialist. Continue reading
Five themes emerged from the focus group transcriptions, common to all three groups: first, the experience of being psychologically overwhelmed; second, communication difficulties; third, transition difficulties; fourth, training needs; and fifth, issues of coping and support. The first two themes capture the experience of families from the moment of provisional diagnosis through to their first few days at the larger treatment centre in southern Ontario. Continue reading
There was another transition to navigate upon leaving the larger centre and reentering the local community in northwestern Ontario. Having negotiated the first transition did not prepare them for the transfer back home. After parents reentered the local hospital environment, staff often seemed somewhat uncomfortable and ill at ease, having little knowledge of what had taken place in terms of the patient’s treatment in the larger centre. Participants recognized the local staffs’ level of discomfort and wondered whether it was a lack of training or simply a matter of not working with young cancer patients on a daily basis. Continue reading
Participants spoke of the difficulties experienced in making the transition from the home environment to that of the larger oncology setting, making reference to a number of issues. Parents, for example, noted that activity had been very intense during the initial work-up for the referral to southern Ontario, creating an expectation that the momentum would continue. In contrast, upon arriving at the larger centre, the perception was that everything slowed down and there was not the same sense of urgency. Continue reading
In other words, it was not unusual for parents to arrive home and meet with the local paediatrician or family doctor before that physician had received a written report from southern Ontario. This placed an added burden on the family to become ‘an expert in the field’ since they often needed to provide a report on the status of their child and the treatment received elsewhere. With today’s capacity for electronic mail it was wondered why the conveyance of clinical notes could not be accomplished much more rapidly. Continue reading
Theme number two: The second theme to emerge consistently across all three groups was that communication was a problem right from the very beginning. There were three components to this theme.
While no fault was found with any one individual or group of care providers, there was an awareness that the system needs to be changed, and gaps in service need to be identified and addressed.
A number of recurrent issues and concerns emerged from the focus groups, and although there was remarkable consistency among the three groups, each made its own contribution and had something to say that was not echoed by the other two groups. Five common main themes were extracted from the transcripts.
Communication difficulties led parents to feel that they were repeatedly being asked to change boats in midstream. The pace and sense of urgency differ from one institution to another, the practices and procedures often vary, and the comfort level of staff in dealing with young patients is often very different. Delays in the transfer of medical information required parents to convey much of this information themselves. Continue reading
The purpose of this study is to examine the possible effects of living in the north away from specialized cancer centres from a parent’s perspective. We are interested in your impressions of the care you and your child received in order to provide recommendations for possible intervention and identify the positive aspects of services currently provided. Continue reading