Table 3.

Representative Quotes of Parental Experiences and Parenting-Related Concerns

Themes	Representative Quotes
Balancing Roles
Time/Energy limitations	“My energy level is so low right now … if I know he has stuff to do in the evening, like I promised him I would take him to the park or outside to play, I will go home and sleep all day long just so that I have the energy to do whatever it is that I promised him.” – Mother, age 39 “…finding the balance between keeping myself as healthy as possible while keeping our family a happy working family unit … that’s always going to be a bit of a struggle.”– Mother, age 44 “I have not found that ideal balance yet where I can do the gym, I can do the breathing treatments, I can handle the kids all in the same, all at the same time during the same day.” – Father, age 38
Emotional impact	“[Having CF] does affect being a parent obviously because there are the times when you are sicker than most moms … that is my biggest concern as far as that goes as being a parent with CF is the disappointment that he sometimes has to feel” – Mother, age 39 “I don’t want them to be hurting for me or for themselves and so it hurts my heart when I see them look at me like, ooh Mom is in a bad coughing fit.” – Mother, age 44 “I wish I weren’t sitting there doing treatment while my daughter’s in the other room playing … I wish I was there playing with her, and I don’t want her to feel like I’m absent in that way.” – Father, age 38
Health Decline
Emotional concerns	“I worry that the kids are worried.” – Father, age 38 “Longer term I think about how is this going to affect my children to watch me, my condition, decline over the course of their childhood and what’s it going to be like for them … it would make me sad to think that I can’t really be there for all of that.” – Father, age 38
Practical concerns	“I would hate for the point that they [his children] would have to take care of me, and my wife would have to take care of me or I wouldn’t be around and so that’s the constant battle that I’ve always had to face.” – Non-parent man, age 27 “…Sleepless nights, kids with flu that you are staying up, having them puke all over you, that takes its toll too. … I always put my kids first even when I probably should have put myself first and that takes its toll as well. … I am learning to say yes, I told you I would take you to the park, … I have just got to rest now.  I have learned to do that in the last few years, but that’s out of necessity.” – Mother, age 44 “I think there’s a part of me that, that worries about like well what if I do get really sick and end up in the hospital or get to the point where I can’t help out around the house or help out with everything.” – Mother, age 28
Early Mortality
Emotional concerns	“…especially if having to deal with mommy dying, that would traumatize a kid and I just, I wouldn’t want to do that to a child. I would feel guilty.  I would feel like I brought this into this, this child that didn’t deserve, didn’t deserve to go through that trauma” – Non-parent woman, age 26 “...if I died early then how would he deal with it because he would deal with the death of his wife plus dealing with the kids see mommy die of a disease.” – Non-parent woman, age 26
Practical concerns	“I just won’t be there for them” – Non-parent man, age 27 “So the proposition of leaving your wife penniless is a very real possibility… Leaving her with a child to take care of on top of that is a pretty big factor to consider.” – Non-parent man, age 46 “No one else would raise them the way that I would.” – Mother, age 39
Adoption Experiences and Concerns	“…We were trying to adopt before and we had a lot of problems with adoption, so we decided to do another round of IVF. … There was a lot of struggle after the first but we felt like we weren’t done with our family. We now knowing that my wife had a CF mutation we really didn’t want to go through IVF again, but the adoption was so difficult that it was like our only option to have that other child.” – Father, age 43 “I don’t know if through my parents or through a pulmonologist that adoption actually wouldn’t be an option … because of my status, with chronic illness, probably we wouldn’t be accepted as possible adoptive parents. So that was the information I had.” – Father, age 38
Genetic Concerns	“I’ve actually just found that out that you could possibly have a kid with CF and you have CF, you’re not exempt … it’s not like having chicken pox, you can have a kid that has CF, but what do you do in that situation? … Do you pass it off … what can you do?” – Non-parent man, age 26 “…you go through all this work to have a child and then your child has CF, that’s disheartening.” – Non-parent man, age 26 “We are doing in vitro … See my wife is a CF carrier too … we are going to have the embryos tested before we even put them in and that way … they can almost guarantee that it will not have cystic fibrosis.” – Non-parent man, age 29
Parent-Child Communication	“I want them to be completely aware of everything and the risks and the potentials … because I believe that open information decreases your stress and anxiety about certain issues, and so I don’t want them to be worried or curious or questioning like why I do treatments or take medicine or why I am getting sick.” – Mother, age 28 “Discussing the fact that I might die with them. That has definitely been the hardest part.” – Mother, age 44 “...having that conversation I have yet to have with my children because they are just too young explaining to them what CF is, how it affects me, and trying to educate them on what’s going on with me and not to scare them, I don’t want them thinking I am going to die tomorrow.” – Father, age 38