Main themes from open-ended data analysis with illustrative quotes

ThemeIllustrative quotes
Pregnancy and childbirth is one thing, but the concern about caring for a child can be greater“My whole life has changed with this disease, even without a child. That's why you think twice if you can look after yourself and a child.” (Spanish sarcoidosis respondent)
“It is still an issue whether a second or third child will come, because being a mother with a lung disease demands a lot and you sometimes don't feel up to the task.” (German sarcoidosis respondent)
“I am afraid that I will not be able to have children and that even if I do, I may die early and leave them without a mother” (Greek CF respondent)
“I see pregnancy as very difficult for women with severe-grade cystic fibrosis and I am always tortured by it since for most people, the dream is to have a family. I especially feel bad for my partner since he loves children and I do not know if we can be parents together in the future.” (Spanish CF respondent)
Fear of a child getting the lung condition“I wasn't properly informed about the risks. I just knew about a not entirely clear possibility of genetic disposition.” (German sarcoidosis respondent)
“The prospects of passing my asthma to any future children frightens me and I would consider genetic testing.” (UK asthma respondent)
“I have thought about the risk of my child getting my condition, and thus consulted professionals for a genetic analysis of my husband to make sure we could have children without the condition.” (Danish CF respondent)
Receiving no or conflicting advice and understanding risk“How to deal with GPs who don't know enough about managing asthma, one even suggested I moved house as there was nothing more to be done for me.” (UK asthma respondent)
“Unfortunately no one could really provide information. The answer was always … it gets better, stays the same, gets worse… not really insightful.” (German sarcoidosis respondent)
“We hoped that after giving birth I would return to my normal state, but that was not the case…my general condition is not at all as before my pregnancy. I must say that we weren't really prepared for this, pregnancy was the unknown but we never thought that my general condition would be what it is today so long after.” (Belgian CF respondent)
Worries about medication“I'm not sure … whether my medication could harm my unborn child, especially in the event of an emergency.” (German asthma respondent)
“Information about conceiving and also breastfeeding whilst taking Rapamycin. I believe only around three women worldwide have been pregnant whilst taking this medication and no animal testing or lab testing has taken place in this area.” (UK LAM respondent)
“After birth when my chest was sore from using gas and air … it was dismissed … I took it upon myself to increase my preventer medication with no advice given as to how this may or may not affect my milk.” (UK asthma respondent)
  • CF: cystic fibrosis; LAM: lymphangioleiomyomatosis.