Table 2.
Baseline and Post Intervention Themes.
| Theme | Illustrative Quotes | |
|---|---|---|
| Baseline | ||
| Theme 1 | Uncertainty and hesitation with leaving a place of safety and support | |
| Subtheme 1 | “I’m nervous about going in and I need support”: Navigator Assistance With Healthcare Transition and Health Management | "I guess like getting me ready to go there and…even if you can’t meet up for the first time, just go in there and just introduce yourself, get familiar with the doctors and then … she can help me with figuring out what kind of things I need to do when get to the doctor's office"(EDM−137) "Well I’m concerned with all my like, parking and stuff… Especially moving into a separate hospital. I wouldn’t know where I’m going and stuff, and some clinics will be in a different building … I know some of the doctors told me that some of their clinics will be like in downtown. And then in [Adult Hospital] and a different hospital again and different clinics" (CGY−064) “We try to go over to my mom’s original doctor that she goes [to]… but she doesn’t like my condition so she doesn’t want me to, she doesn't want to become my family doctor" (EDM−085) “You know the hardest thing for parents like me is finding actual care givers” (Caregiver CGY−080). "I think they would [be able to help] because I don’t really have a lot of access to, well, like adult providers like that other than like school. So it would help kind of get into it … because once I leave school, I would have that kind of outside as well." (EDM−078) |
| Subtheme 2 | “We are paying a lot out of pocket”: Navigator Assistance With Financial Support. | "Personally I may end up having an issue just with cost at some point … I don’t necessarily know what the future holds for me monetarily" (EDM−043) "Right and if I get a pump like depending on the pump that I get that may not be covered, I’m not currently on a pump but I do if I do get one there may be issues around that" (EDM−043) "I will probably need financial support because all the medications I am on, like we are paying, like right now my mom and dad are paying for them, but we are paying them, like some of the insurance pays for it, but we are paying a lot of it out of pocket" (EDM−137) "Will I have insurance?" (CGY−064) |
| Theme 2 | "I’m actually really nervous about going to university": Navigator Assistance with Preparation and Transition to Post-Secondary Education | “I think [my health condition] will affect me more in post-secondary” (CGY−064) “I will have to do a half course load and maybe help me transition to that … also keeping aware that I am in school and I have to keep up with it and keep up with my health” (EDM−137) "Cause like since I’m applying for college, I want to learn about ways that will make my life easier (laughing)… cause it’ll be hard to move around and stuff." (CGY−064) "Just the disability" (EDM−006) “might need help with the student loans” (EDM−006) “I’m actually really nervous about going to university, like taking, being in larger classes it might be little harder and maybe they’ll [patient navigator] help me transition in that as well.” (EDM−078) “figure[ing] out how to apply properly” (EDM−043) “I would like to be able to pay for my books and go to school” (EDM−085) |
| Post-Intervention | ||
| Theme 1 | “They’re always there”: Emotional Support | "It actually blew me away…she’s the first person to actually pick up a phone and go ‘hey, are you okay?’” (EDM−075, Caregiver) "And then I, she asked me how life was going and I kind of just poured my heart out on her cause, you know, I had this big connection with her and I asked her if she knew, if she could provide me with any help and she said yes, and she like started giving me, um, different resources to help" (EDM−137) "I also just like the fact that, um, they call me like, like it's more like a reassuring gesture. Like, oh, we are here if you are, if you need any help." (CGY−064) "Maybe it felt more like talking more to a human (laugh) not the doctors are inhuman but like it was kind of nice because she did sympathize with both sides …well informed about COVID but at the same time you know she was able to sympathize of how quarantine seems to have been, especially with still in school and things like that, so I really enjoyed that I thought it was kind of nice" (CGY−084) "If I needed something, she was there. I mean she’s been there more for me then any social worker or any doctor. " (EDM−075, Caregiver) "I think in my opinion, I think um, and probably same as [participant name], it was her biggest role was just the supportiveness. Mm-hmm. Like being able to, um, help us okay. Direct us which way to go or if there was a service that could help us with something, she was always there" (EDM−219, Caregiver) “[someone] who does understand, at least at some level the kind of stress and everything that does come along…with a chronic condition that kind of makes you an outlier in a lot of your friend groups and situations" (EDM−043) “made [the transition] easier and has reduced my stress significantly” (EDM−043, journal entry at 12 month time point). |
| Theme 2 | “She would look into it and get back to me”: Informational and Task-Focused Support | |
| Subtheme 1 | Healthcare and Community Resources and Support | “If it wouldn’t have been for my transition navigator kind of telling me what exactly had to be done, I wouldn’t have had a clue and I would have been fumbling through the system with supports not in place.” (EDM−047, Caregiver) "If the navigator contacted them, they got back to her immediately. So she was able to, if she was looking into something for me, she was able to get back to me within a day or two if I wasn't able to reach them. Um, and then she was able to get appointments or let me know if he's on a wait list for an appointment or already currently has an appointment. Whereas some of the other clinics, it was just, we, it took months to hear back from." (CGY−080, Caregiver) "Honestly it was amazing. I was trying to apply for my [government funding] and with the [PNs] help, I was finally accepted after how many years of trying, so it was really good" (EDM−006) "She gave me a lot of contact numbers and that for me to get a hold of different people, so that really helped because I think otherwise you'd just be… floundering if you didn't exactly know where to start" (EDM−149, Caregiver). “[Navigator] was very supportive that way when we were getting our paperwork in for guardianship and trusteeship, she was very good that way and helped us out, and talked me through it for some of the parts, so got me going." (EDM−149, Caregiver) “When I started my college program, she informed me [about] some things for people with like disabilities and stuff and like uh medical issues. So like for Cohn’s, there’s something for Crohn’s at the, at the college I went to…it was something that she brought to my attention cuz I didn’t know before we had our call” (CGY−095) “You name it. I mean, if I had a question, she’d figure it out.” (EDM−075, Caregiver) “If I had anything, questions in between, I could text them any questions I had and they would get back to me.” (CGY−092) "And I also got information on sexual health stuff at one point… cause that's super important as a diabetic." (EDM−043) "Sometimes it’s hard to find a lot of resources when it comes to specialist care so I think that was kind of like the best thing they provided was that they were able to find and access you know… certain resources and again like if was medications and stuff I didn't really know where to find they were really good about being able to do that." (CGY−084) "I had specific medication that I have to take and it isn’t covered by health care but they had a bunch of resources to, you know, to tell me like who to call and who to write a letter to get it covered by health care and things like that so that was really good too." (CGY−084) "She gave me numbers for if I felt suicidal or anything like that. She, um, she, she gave me numbers to contact if I ever felt like that. And she provided phone numbers to call for therapists and counselors to call and she said, call your family doctor, they've gotta have someone that, you know, they send their patients to and um, you know, look in the community to see if there's any therapists that you can see. And, uh, that helped a lot. That she was also there for my mental health and not just my physical health.” (EDM−137) "I would say [their role] was largely to provide support on topics or ways that other people in my life couldn't or at least she could do it more easily than having to reach out to someone like my [specialist] who was always super busy." (EDM−043) “She set me up with a guideline with exactly how to apply for uh trustee ship, guardianship…um how to apply for [provincial funding program] how to get [provincial funding program] going for [child’s name]… She even set me up like with a timeline of this has to applied for by this date and after you can, you can’t apply for this until this is done, so this is step one when step one is done you got step two, and to have that in place, because I wouldn’t have - nobody sits down and tells you these things, so without a navigator telling me these things there was no doctor that told me, no teacher, no educator that told me everything that had to be involved with my special needs child turning eighteen.” (EDM−047, Caregiver) |
| Subtheme 2 | Self-Management Resources and Tools | “It was a very useful tool” (CGY−078). “They shared like different apps I could use or different resources.” (CGY−092) “They helped me with tools on your phone. Like writing down notes of what medications you have, so you always have those things … [and] an app that you can write lists in of like what prescriptions you’re on, when you take them, and like what doctors’ appointments you had recently.”(CGY−078) |
| Theme 3 | “I used every method she taught me. It worked”: Navigator Guidance to Become More Independent: | "They really helped me improve, like how to book appointments, how to get the medication, how I can talk about my condition… past history, medications and just everything like medically involved…So they really helped me like have the confidence to call the doctors and then follow up if I need appointments, if I need anything, like getting a taxi or like getting prescriptions, anything like that." (CGY−064) "It helped me a lot and it helped me become more independent as a person, just not in my medical, um, aspect of life, but my regular day to day life … I'm just like this more confident, self-confidence, independent person now because of her"(EDM−137) "The transition navigator …said like ‘talk to your doctors and let them know like you get out of class around like 3:30 so have them call you with your appointments around 4:00 before somebody leaves like set up a system that works for you’"(CGY−078) "Yeah having like the goal setting and stuff like these things are going to do in the next week or the next couple weeks to months and so on, so you sort of have these periodic goals that you can accomplish and talk about with them with the next meeting."(CGY−084) "I told her I was very nervous for my very first appointment with an adult provider. And she basically, we sat down and we just talked it through. She taught me, okay, this is what you need to do. You need to advocate for yourself. Tell them what's going on, tell them what you've been doing for the last two years. Tell them what needs to happen with the rest of your, um, with the rest of your health. Right? Because not everything gets translated from pediatrics to adults and you have to relay all the information. And she told me, cause I didn't know all of my history with my family, she said, you need to get with your mother and you need to get all the information. So that's what I did." (EDM−137) "She helped me write everything out what I should be saying on there. She's like ‘tell nothing but the truth. But also make sure you are seeing what your worst days are’…And so I did that and it's still an application but you know, it helped me be realize, okay, this is what I need to do for any other applications in the future for other providers" (EDM−137) |