Themes | Sub-theme | Representative quotes |
Uncertainty | Regulations | "I thought [the access gap] was 13–18, actually." (Participant #118, nurse with 13 years’ experience) "I'm still a little, little hesitant [about how it works]. That's why I thought, I'll participate in the interview and learn from you." (Participant #22, nurse with 34 years’ experience) ”I think the parents are quite aware [that they will lose their access]. However, the healthcare system does not always know about it. They have no idea that parents do not have access to the medical record” (Participant #03, nurse with 22 years’ experience) |
Extension | "I initially thought that it was only the parents who could apply for permission to read. I was actually unaware that the children could do it." (Participant #104, physiotherapist with 13 years’ experience) "Parents ask: ‘can I get authorization to access my child's medical record?’ [...] It has probably come up a couple of times. And then I have talked to the secretaries, who I think ... Now I feel uncertain. I think they have said that otherwise you can request the medical record to be printed, because you can at least do that, right?" (Participant #118, nurse with 13 years’ experience) |
Adolescent and parental access and use | "If parents receive an X-ray result before we do, or if children don't want us to write things in the medical record because they don't want their mom and dad to know, it's so darn difficult to know what is shown when you block a record, and what shows when using different search terms." (Participant #18, physician with 12 years’ experience) |
Adolescents differ | Low perceived use and interest | "My experience is that [adolescents in general] come here, lie down in bed, get their treatment, and then go home when they're done. They don't want to know, and then it's difficult if they are the ones who should get the information to then pass on, and keep track of 'how long should I take these medicines at home?'" (Participant #02, nurse with 23 years’ experience) “I think the times they log in, that we hear about them logging in, it's more at the parents' request to check’ what time we're supposed to be there’ or ‘how your tests look’, and so on. That maybe it's not so much their own need they're logging in for." (Participant #33, nurse with 13 years’ experience) |
Depends on factors other than age | “Some children are a bit too young to understand what is written in the record.” (Participant #104, physiotherapist with 13 years’ experience) “You're not very mature when you're 13 years old. You don't have much responsibility yourself. But at the same time, some mature much, much earlier than others. So, it's incredibly difficult to pinpoint an exact age.” (Participant #22, nurse with 34 years’ experience) |
Involvement | “I think that they may be more receptive to being involved. Because it's a natural part of growing up to have your phone or iPad or... So the EHR somehow becomes more accessible.” (Participant #118, nurse with 13 years’ experience) “There are some teenagers who keep track of their test results and manage a lot of that themselves. Even if parents are involved too, they are still actively participating in their own care." (Participant #06, nurse with 1 year of experience) “It varies greatly depending on one's level of interest and developmental stage. But I think having the option available can be really beneficial." (Participant #22, nurse with 34 years’ experience) |
Balancing parental support and adolescent privacy | Sick adolescents depend on parents | “Even a 17-year-old or a 17.5-year-old who is newly diagnosed almost always becomes dependent on their parent and needs their parent. Then it feels more like they are transferring the responsibility to the parents." (Participant #03, nurse with 22 years’ experience) "We work with the whole family, and I still haven't encountered any teenager who says 'Mom and Dad aren't allowed to see what I'm doing in cancer treatment,' and there one might need to be there to support one’s teenager. Because it's tough if it's only the teenager who has access to those parts." (Participant #22, nurse with 34 years’ experience) |
Allowing privacy | “Some say 'yeah, I don't care either way, you can check.' And some say like 'no, that's mine. Why are you snooping?' So I think it's very different, and people have very different relationships with their parents.” (Participant #118, nurse with 13 years’ experience) “A 13-year-old, a teenager, is already quite vulnerable. If, for example, you are going to some kind of youth clinic or something similar where records are kept anyways, I still think it's somehow positive that you can maintain some anonymity from your parents in that way.” (Participant #81, nurse with 5 years’ experience) |
Privacy of adolescents with cancer | "At the same time, I find it a bit difficult, especially when they are hospitalized for oncological diseases, that they cannot have that type of control or access to their record.” (Participant #81, nurse with 5 years’ experience) “Because I'm thinking, in that case, by [allowing extended access] said that that child’s their privacy is not as high as someone else's. Do you see what I mean?" (Participant #118, nurse with 13 years’ experience) “That older teenagers need to log in because their parents absolutely want to know, we've seen that.” (Participant #41, physician with 12 years’ experience) |
Controlling parents | “For most parents, they could potentially have access for a little longer, and for the parents who can't have it between 13 and 16, maybe they shouldn't have it before 13 either.” (Participant #18, physician with 12 years) |
“I understand why access is restricted, but…” | Hinders care | “I think it’s a scandal to be honest. Because it gets incredibly difficult to manage for our families. It depends a little. Those who are undergoing treatment, it gets really hard. Because the parents can’t see and they need to call regarding lab results. They already have their hands full and it gets hard for them.” [Participant #03, nurse with 22 years’ experience] “It's also very strange because then you think, what is it between 13 and 16 that makes it sacred so that no one can access it? Because I mean, if you have a child who gets sick at 12 years and 9 months, then the parents will still want to have an understanding of what's going on. And I mean, what is it that makes it locked during that period? And how does it benefit healthcare that it's closed?” (Participant #118, nurse with 13 years’ experience) |
Losing access is frustrating for parents | "It's often frustrating when they can't access it themselves, because they usually check test results and such. Then they have to ask us instead, and… [...] when they're at home, they might not want to call. So, it's often tough when they don’t have access.” (Participant #06, nurse with 1 year of experience) “Some [parents] ask immediately when it happens: ‘why can’t I see this or that?’ [...] It depends a bit on age; some who are around 14–15 usually have a good handle on things, but those in the middle, around 11–12, transitioning to 13, might be more shocked and perhaps irritated instead." (Participant #81, nurse with 5 years’ experience) |
Cumbersome application process | "Since we have a shortage of places, we relocate the children to other regions, and then the parents need to apply for access there as well. [...] After a while, parents need to fill in four, five forms. And on top of that one has regular work to do, and maybe more children to take care of. But that’s what the law looks like now.” [Participant #02, nurse with 23 years’ experience] “I tell [parents] that it’s not something you fix in fifteen minutes. Because you don’t. It takes weeks, in the cases I've been involved in.” [Participant #03, nurse with 22 years’ experience] |
Regulatory changes | Close access gap | “I think there could be shared responsibility between 13 and 16.” (Participant #03, nurse with 22 years’ experience) “I understand the idea that maybe you're not old enough to understand, but if no one... then I think you should have access when you're 14, 15 in that case, when parents no longer have access." (Participant #06, nurse with 1 year of experience) |
Enhance information and process for extended access | “I just find it strange that there isn't more outreach... that there aren't informative brochures available at the hospital, for example. Something like, 'Did you know you can access your medical records?’” (Participant #104, physiotherapist with 13 years’ experience) “But somehow within pediatric oncology, it should still be possible for the head of the home hospital to approve access to the pediatric oncology record at all children's hospitals. […] And now it's a paper form to fill out, and I'm thinking, can we look into digital solutions for the whole process, where parents apply digitally? And then the head of the department approves or rejects it digitally as well.” (Participant #02, nurse with 23 years’ experience) |
Customized record | “I think it would be easier if we could control which things everyone would have access to, rather than controlling different ages and so on. Because then it might get a bit messy to explain as well, like 'no, you're not a mature 13-year-old, you can't have this.'” (Participant #22, nurse with 34 years’ experience) “Sometimes one would wish that there were... well, there are, but... it might be utopian, but that there were different records. One directed towards... between healthcare providers and one directed towards families.” (Participant #03, nurse with 22 years’ experience) |