Themes and corresponding illustrative quotes
| Theme/subtheme | Illustrative quote |
|---|---|
| Procedural justice | |
| Transparency from clinics | I wasn’t made aware of any sort of transparent process, I was just told I’m on a wait-list with no contact information or where I am on the wait-list. Is it a lottery wait-list? Is it a time-based wait-list? I have no idea, and I also didn’t know it’s the clinic [itself] that [is] doing it. (Focus group 3; participant 2) |
| At the least ... if the clinics are doing different things, I think they need to be extremely transparent about what they’re doing, at least you’re going in with your eyes open ... understanding the difference from clinic to clinic. … That way you can make an informed decision. (Focus group 4; participant 2) | |
| Consistency among clinics | It just doesn’t make sense. If I walk down the street and go to another clinic, I’m going to get ... different care. This is completely contrary to ... what the Ontario health care system, Canadian health care system is about. (Focus group 3; participant 1) |
| There has to be [the] same criteria. It kind of made me mad, to be honest, that now I have to shop around? To see which clinic I would have better options with? (Focus group 2; participant 1) | |
| Gatekeeping of funding wait-list | I was on the list at [Hospital X] just because they threw me on first time I met with them. But at another place, they wouldn’t; they said to wait. But I don’t know if it’s because they had a different system that wasn’t first-come, first-served. (Focus group 4; participant 4) |
| They need to have some kind of standardized protocol. ... This person comes into [the] clinic … first assessment, whole bunch of different tests, then we’re going to try [intrauterine insemination] if that’s an option. We do at least 3 or 4 [procedures]; if you don’t get pregnant by 3, then it’s no chance versus ... somebody who comes into the clinic [for whom intrauterine insemination] is not an option, could be low sperm count or whatever it is, and then they go to IVF right away. But again transparency — needs to be a clear process, and if you don’t get placed on the list right away you need to know why. (Focus group 3; participant 1) | |
| I received the email by the end of last year, that ... “We have an opening,” so I replied to the email right away, and then I didn’t hear anything and I thought “I probably didn’t make it,” so next time when I saw the doctor to do the timed intercourse ... they told me “We have an opening, do you want to be on the list?” I said “Sure!” (Focus group 4; participant 3) | |
| Substantive and distributive justice | |
| Provide fair chance and equal access to IVF | I think when you define success, to the ministry it’s live births. I know that’s the end goal, but success ... as a society… is the access. That is, giving everybody a chance. Even for me, if I had multiple cycles and it didn’t work … the end result wasn’t live birth, but ... emotionally ... I would feel like I gave it all my all and I tried. And that would have [given] me peace of mind no matter the age. (Focus group 3; participant 2) |
| Methods of distribution of funds by clinics | Age is another important factor ... the people who are closest [to age 43] should be able to get on this list as soon as possible so they have as many chances as they can to get [funding]. (Focus group 3; participant 1) I actually have a kid, and I don’t think ... I should have priority over someone who doesn’t have a kid. (Focus group 3; participant 1) |
| Barriers and challenges to accessing IVF | |
| Lack of information and communication | It’s already, like, you’re trying to remember how to take the medication and everything else; there’s a huge list [of extra fees] and [you have to] strain out what’s actually relevant to you, it’s just a little overwhelming. (Focus group 4; participant 4) I literally got a new phone because I need my phone to always be charged and available because that one day it’s not available and I can’t get a hold of them, and I miss a call, and they leave a message, and if I have a question about the message, [it’s hard] getting a hold of them. (Focus group 4; participant 4) |
| Cost of fertility treatments | Aside from the procedure, even just the medication is enough to ... even this month, me and my husband are very tight on our finances, this month we had to struggle more because we had to pay for the freezing of the embryos, the medication; [my husband] almost fell over and passed out seeing what we’re paying for. (Focus group 4; participant 4) |
| Stress of experiencing infertility | It’s an emotional time when you’re going to a fertility clinic and you’re being told what your options are and are not, and I feel like for me to be able to make a good decision, a right decision, there should be social worker involvement, or even a psychologist to put things into perspective would have been helpful. It almost feels like a factory at times, when you’re just another patient. (Focus group 2; participant 1) |
Note: IVF = in vitro fertilization.