Key themes and illustrative quotes from health care providers and childhood cancer survivors
| Key theme | Illustrative quotes; type of participant | |
|---|---|---|
| Health care providers | Childhood cancer survivors | |
| Challenges for rural survivors | I find that on the west coast [of Newfoundland and Labrador], or outside of St. John’s, with the patients that we see in our travelling clinics … the family physicians are so in flux in rural communities that most of these patients don’t have a family physician and often we’re [the pediatric medical team] the only people that they see. (HCP 2) | It’s a big difference [being in a rural community] because it’s a 12-hour drive [to the Janeway], so to come in here every year to get the check-up, it was a big deal. (CCS 4) |
| Changes in availability of services after transition | I wouldn’t say “loss of services” … I think that maybe there are some services that are not as emphasized on the adult side. … On the pediatric side, there’s a little bit more emphasis on the sort of social work part, school, integration, those sorts of things. That all of those resources are available on the adult side, I just don’t think that there’s as much emphasis. (HCP 6) | Okay, here’s a doctor, here’s a psychologist or here’s whoever, you could go talk to, but since I haven’t had that appointment [since the Janeway], I feel like I’m missing out on a lot of resources … that could be beneficial to me and even when I was in the pediatric care. (CCS 2) |
| Challenges with navigating the adult system | I think the biggest problem [is] for patients that are not connected to any place or person. They’re not connected to a family doctor because they are moving around the province for school, or the country for school or jobs and so; they’re not, they’re not grounded anywhere to maintain those connections. I think if you polled most young adults, they would have no idea [how to navigate the health care system]. (HCP 2) | [Be]cause I feel like it was more of a miscommunication in care where maybe one person thought it was being taken care of … or they thought it was somebody else’s job, but I wasn’t ever followed up. I was told I would have been and have something in place to transition children from the Janeway to the Health Sciences [Centre], or whatever the hospital that they’re seen at. (CCS 3) |
| Lack of education surrounding transitions | [Childhood cancer survivors] need to have an understanding of what their treatment was, what their diagnosis [was], and what are the important things to remember for their ongoing health. I think if you polled most young adults, they would have no idea. And ask them what they would do, they would all feel the same way. (HCP 1) | I still had a family doctor at that point but there wasn’t really any contact between them. … the whole leukemia thing was kinda dealt with in the Janeway and then like, anything outside of that was just kind of taken care of by my family doctor and he didn’t really know anything about the cancer, and they didn’t know anything about what was going on with my family. (CCS 2) |
Note: CCS = childhood cancer survivor, HCP = health care provider, Janeway = Janeway Children’s Health and Rehabilitation Centre.