Table 3.
Representative Quotations
| Quote Reference Number | Respondent | Quote | Study |
|---|---|---|---|
| Fertility In Trust | |||
| Keeping Options Open | |||
| Q1 | Adolescent | “I decided there and then and it’s question of [um] it’s just a hundred things running through your mind, but at the end of the day it’s best to have that option left open.” | A2 |
| Q2 | Adolescent | “…Cos if I didn’t [bank] and it came out at the end of treatment that I was infertile then, I dunno, it would be a … bugger, really, yeah, er, cos like in later life if you ever wanted to have children, like you wouldn’t have anything.” | A3b |
| Q3 | Parent | “Whether she wants to have children or not, you want them to be…capable of having a choice.” | A8 |
| Q4 | Parent | “I don’t want to deny him choices in the future by deciding for him now.” | A11 |
| Q5 | Provider | “I think it’s our duty as oncologists to offer fertility preservation, because only before start of treatment is there the possibility to do so.” | A11 |
| Future QOL & Milestone Achievement | |||
| Q6 | Adolescent | ““Well, the whole opening up thing and telling someone, it’s really hard because I don’t want a pity party. I don’t want someone to feel sorry for me. I don’t want them to judge me.” | A5 |
| Q7 | Adolescent | “How do I go into a relationship and say, “I can’t have children,” am I gonna face instant rejection?” | A2 |
| Q8 | Parent | “What counted for us was the thought that, well, let’s suppose that he wants to start a family, that his future wife has a strong child wish, and we would have blocked the way.” | A11 |
| More Important Over Time | |||
| Q9 | Adolescent | “I didn’t think a thing about fertility until I was 20 and people started getting married and talking about babies and stuff.” | A5 |
| Q10 | Adolescent | “Well I declined and it’s a decision which [pause] I think was the wrong decision now, but it’s easy to look back and say that it was the wrong decision, when you’re in that situation, you know, maybe it is.” | A2 |
| Q11 | Parent | “It became more and more important as you saw them getting well…” | A8 |
| Q12 | Provider | “And maybe later on, when they are 25 years old they come back to me and ask: doctor, why didn’t you offer it to me?” | A11 |
| Pregnancy/Parenting Intention | |||
| Q13 | Adolescent | “So I thought well if I say no, that’s my chances of having a kid gone, so best option is saying yes.” | A2 |
| Q14 | Adolescent | “…And children I suppose, not being able to have children. That did pop into my head, even at 15 it popped into my head.” | A2 |
| Q15 | Adolescent | “I feel like I’ve known from a young age that I love kids…the thought of not being able to go through…that process of being pregnant was very, very scary for me.” | A8 |
| Q16 | Adolescent | “…I didn’t want to continue with treatment after they told me that I had ovarian failure. You know it was…it was very traumatic.” | A8 |
| Hope & Comfort | |||
| Q17 | Parent | “I think it also gives a large measure of hope and expectation to someone at the front-end of it.” | A8 |
| Q18 | Provider | “It does in a way give a ray of hope… with boys if you don’t do the sperm banking early, you miss your chance.” | A16a |
| Q19 | Provider | “You are giving a message that says I expect your kid to live.’ | A16a |
| Q20 | Provider | “‘If I know the patient has a very curable disease… then I will bring it up. You don’t give caviar to the poor person who does not have enough to buy bread. | (A16b) |
| Decision Making Challenges | |||
| Sensitive Topic | |||
| Q21 | Adolescent | “The doctor who told me this was really sort of, really weird as well, the way he told me. He made me feel like a kid or something. It was really embarrassing.” | A2 |
| Q22 | Adolescent | “Which was a slightly embarrassing situation to be in. To be given a pot with your parents down there and to go in the room and fill in, was embarrassing.” | A2 |
| Q23 | Adolescent | “When my Dad came in and asked me if I knew how [to masturbate], I was very embarrassed…” | A3b |
| Q24 | Adolescent | “I just think you need to know your options. Even though it might seem kind of weird at first you know, I mean thinking about that when you are so young. It still has to be presented to the parents and the patient.” | A8 |
| Q25 | Parent | “Is it reasonable then to confront him with this side-effect? We told the physician not to mention it to him”. | A11 |
| Q26 | Provider | “I am uncomfortable contributing to the stress of the situation by bringing up fertility issues, even without a cancer diagnosis this can be an embarrassing topic.” | A16c |
| Q27 | Provider | “There is a certain degree of embarrassment (with parents). It’s hard in that kind of emotional situation.” | A16c |
| Q28 | Provider | “It’s important that you (the physician) not be embarrassed about it…but some parents don’t want to deal with it. They don’t want to think about their kid masturbating.” | A16b |
| Vulnerable Time | |||
| Q29 | Adolescent | “And it was a bit, all a bit rushed and I was thinking really more about the treatment and was it going to kill me rather than anything else.” | A2 |
| Q30 | Adolescent | “That yes it’s not a very nice thing to hear, and yes you’ve got a lot going through your mind at the time and the last thing you need is to be told is there’s a chance you could be infertile at the end of it … it’s better than not being told.” | A3b |
| Q31 | Parent | “The evening before the start of the chemotherapy he [the child] was told about possible infertility and semen preservation. Later on we told them [the physicians] that the timing was really bad. We felt it was mentioned too late. They should have mentioned it during the first conversation.” | A11 |
| Q32 | Provider | “It’s too much all at once – diagnosis, treatment, future, and parents often do not want to hear it anyway so I don’t add to their stress or mine.” | A16c |
| Q33 | Provider | I think that part of what happens. is (parents).. don’t give a damn about the rest of it. All they care about is if their kid (going to live). | A16b |
| Q34 | Provider | “It’s very emotional … it’s sort of like adding insult to injury, to many families the (infertility) is even worse than the cancer.” | A16a |
| Q35 | Provider | “An overwhelming amount of information is being presented in a short-time. Even if you’ve got it on video tape they don’t remember.” | A16a |
| Control of Information & Decision Making | |||
| Q36 | Adolescent | “I didn’t really think about it, to be honest. I just said yeah pretty much on the spot.” | A3b |
| Q37 | Parent | “I think the sequence is wrong. You should first contact me, when you want to discuss things with my child.” | A11 |
| Q38 | Provider | “Some families have different beliefs or religions and we don’t find out what the kid wants because the parents don’t continue the discussion.” | A16b |
| Q39 | Provider | “Some parents just don’t want to hear about it.” | A16a |
| Q40 | Provider | “I think it should be offered and I feel justified in passing over the parents. If I think the child is ready and parents doubt that, then I think it’s in the best interest of the child to go ahead.” | A11 |
| Constrained by Options | |||
| Q41 | Adolescent | “…If the boys get told why don’t the girls?” | A3b |
| Q42 | Adolescent | “I do remember thinking it was just totally unfair that guys could freeze their sperm and there really were no options for women.” | A8 |
| Q43 | Parent | “I kind of felt it was either you did this or she’ll die…I mean it didn’t seem like there was a choice…” | A8 |
| Q44 | Provider | “And for some young kids (pre-pubertal) there is nothing they can be offered so why make everyone worry?” | A16c |
| Q45 | Provider | “First of all, there is no one within this community who would be willing to do cryopreservation if it involved a cancer site – so I don’t like to present options to patients that are unrealistic.” | A16c |
| Provider Variability | |||
| Q46 | Provider | “I feel really challenged by the whole discussion (FP) – I wish there were a counselor who did this… a specialized nurse… you start adding in different cultural backgrounds and religious preferences and the time factor and this is an important, but messy topic | A16c |
| Q47 | Provider | “Talking about this with males mean talking about masturbation and in some Hispanic families that is not acceptable. Having to talk through an interpreter also makes it awkward for everyone.” | A16c |
| Provider Knowledge & Practice | |||
| Q48 | Provider | “Someone with more information than me should be talking to these patients – I’m not comfortable with the topic or the emotional aspects of this.” | A16c |
| Q49 | Provider | “I must say I doubt that I’m any kind of authority on this, uh, and but, you know, I am willing to bring it up because I know it’s a problem.” | A16a |
| Q50 | Provider | “It’s a problem we run into in this town—there is just no place (to send patients).” | A16a |
| Discrepancy Between desired and actual experiences | |||
| Q51 | Adolescent | “I will just add that … I think I remember being shocked like after treatment they are like, oh well fertility is an issue, and I am like it is? Like I was shocked”. | A8 |
| Q52 | Adolescent | “And I think it was very recently that anyone brought up that it was possible that they could’ve done some preventative measures at the time. And that was more disheartening than anything, that no one discussed that.” | A5 |
| Q53 | Adolescent | “I think there would be a lot of angry and upset girls if they weren’t told from day one.” | A3b |