Major themes and subthemes organized by interview topic appear in Table 3.
Infertility: definition, diagnosis
Participants were asked to define infertility which provided a baseline for the future infertility-related questions. All participants had a general understanding of what is meant by the term infertility, evidenced by the major theme: the inability to have children (18/23 women, 14/16 men).
From what I know, infertility is like…after married and then you had sex and everything and you’ve been trying and trying for a long time and you still can’t have kids. ID-11; male, aged 21, Indonesian
That you can't produce children even though you and your partner have regular sexual intercourse ID-31; female, aged 22, Iranian
The association of infertility with an underlying biological/medical problem emerged as a subtheme for women (6/23).
Infertility it’s when you’re unable to have a child because of either different medical reasons and maybe some conditions that you were born with or maybe something in the environment that causes you to become infertile later in life. ID-3; female, aged 22, Algerian-Canadian
[Infertility] this just means that you cannot produce enough eggs or sperm to have children ID- 27; female, aged 21, French-Canadian
Participants were not confident describing mechanisms of infertility diagnosis, with most providing multiple responses. Major themes included: diagnosed by doctor and trying and not conceiving. Participants commonly indicated that infertility was ultimately confirmed by a doctor (14/23 women, 7/16 men) through a series of medical tests (subtheme).
A physical check-up. If you try to have children and you can’t. And then he would, or she would do a whole bunch of tests. ID-16; female, aged 19, Canadian
If, I guess, when you can’t conceive a child then you might wanna go see a doctor, see if there’s a problem with your reproductive organs Because they can do a series of tests, I’m not really sure what they might do, but with some medical and diagnostic tests. ID-18; female, aged 22, Persian-Canadian
Several women (11/23) and men (4/16) explained infertility diagnosis as trying and not conceiving; recognizing that prior to medical intervention the couple must attempt conception through regular sexual intercourse.
Yeah like if you tried for a significant amount of time and you just found that it wasn’t happening then obviously I’d probably end up going to the doctor telling them we’ve been trying for a couple of months and nothing’s been happening. ID-20; female, aged 20, Sikh-Canadian
You keep having sex and trying but the lady isn't getting pregnant ID-28; male, aged 22, Ethiopian
Many participants recognized that medical tests would be sex-specific suggesting separate, yet unspecified, tests for males or females. Although some participants were able to identify semen analysis as part of male infertility investigations (6/23 women, 4/16 men), both men and women were less familiar with female infertility assessments. Only two men and three women identified medical testing of eggs, ovulation or hormones in the investigation of female infertility.
Well depends on the person who’s infertile, is it the woman or is it the male? Don’t they test your sperm and see if the sperm cells are fertile or not? Or if they check the egg and see if it’s a problem with the eggs or something. ID-5; male, aged 19, Kuwaiti
I think it depends on the condition that you have, for some it could be that they lose their ovaries as a result of cysts. For men, they don’t have a sperm count. For women, it could be hormone levels. I think it really depends on the condition that you have and the stage of the disease or illness or whatever you wanna call it, condition. Through a series of tests, obviously there is ultrasound tests that they could do. I don’t know if blood tests would work, but I don’t think so. Well, for men they could do sperm counts. ID-10; female, aged 22, Canadian
At infertility clinics, I don’t know. I’m sure they test on sperm count and motility of sperm and your egg production. ID-14; female, aged 21, Canadian
In general, both men and women expressed a good understanding of the definition of infertility and the need for medical diagnosis. Knowledge gaps included lack of awareness of specific diagnostic tests for women or early warning signs such as irregular menstrual periods, anovulation, excessive bleeding or pain that might indicate fertility problems. No race/ethnicity-specific patterns were apparent.
Causes of infertility
Identified causes of female infertility
Men and women provided multiple causes for female infertility. Advanced maternal age was the major theme describe by women (12/23) and men (8/16). Subthemes included lifestyle (substance abuse/diet/smoking/stress; 5/23 women, 4/16 men) and genetics (4/16 men; 4/23 women).
Age. Genetics, if there is a family history for it then they'd be affected too I think. ID-21; male aged 20, Chinese
I guess genetic disorders, like say you have a chromosomal disorder where you don’t have a, I think for women it’s XX right? And then if you have an extra sex chromosome then it can, then you’ll be infertile and you can’t have children. ID-18; female, aged 22, Persian-Canadian
Age and I imagine illnesses such as cancer and other chronic diseases like obesity and diabetes. ID-27; female, aged 21, French-Canadian
When asked to identify the biggest cause of female infertility about half of men (9/16) and women (13/23) identified advanced maternal age. Given a list of age ranges, most male and about half of the female participants indicated that women’s fertility decreased significantly only after age 40, representing a critical knowledge gap. The correct age range (35–39) [4, 36] was identified by only five women and two men. When asked specifically whether age contributed to female infertility almost all participants (22/23 women, 15/16 men) responded affirmatively, with no apparent race/ethnicity or gender-specific trends.
I’ve heard 35 is a tough barrier to break for a woman. ID-2; male, aged 20, Canadian
Their eggs just get worse over time. ID-5; male, aged 19, Kuwaiti
Cause you can’t have kids past 40, 45, when you go through menopause, ID-10, female, aged 22, Canadian
Yes. For women, as you get older, I think your estrogen levels go down, I think. And then there’s obviously menopause. ID-18; female, aged 22, Persian-Canadian
Infertility and reproductive health knowledge gaps were sometimes apparent. Most participants could articulate a general definition of infertility but a few lacked reproductive anatomy/physiology knowledge and many confused menopause with infertility. Responses often included ‘I’m not sure’, ‘I think so’ or ‘I guess’, suggesting participants were less certain about infertility risk factors.
Some women aren’t even born with eggs, so that’s infertility right there. ID-6; female, aged 21, Canadian
As far as I know, I think all women go through menopause right? ID-19; male, aged 19, Ethiopian
Identified causes of male infertility
Lifestyle (drinking/alcohol/smoking/stress; 7/16) emerged as the major theme for men’s perceptions of risk factors for male infertility followed by subthemes genetics (4/16) and advanced paternal age (4/16) In contrast, women predominantly identified low sperm count (8/23), followed by lifestyle factors (6/23).
A lot of people who have drug problems have a low sperm count, that also affects their sex drive, their libido, so that makes them more likely to be infertile. ID-6; female, aged 21, Canadian
Probably drug abuse, diet, alcohol, age probably too. ID-9; male, aged 20, Chinese
When asked specifically about risks of paternal age to fertility a gender gap emerged. Men (11/16) identified advanced paternal age as a risk factor for infertility whereas women (14/23) did not believe paternal age was a significant infertility risk. Women considered paternal age relative to the greater infertility risk of advanced maternal age.
The popular notion is that [age] doesn’t, that men can have children until they’re old-aged, but I think as you age your body kind of breaks down a little bit and so that probably would impact men as well. Maybe not to as great of an extent as women. I would say yes. ID-3; female, aged 22, Algerian-Canadian
It’s not supposed to, but it probably…the number of sperm could actually, probably decrease but there should still be some fertile sperm. Yeah I said that reproduction will decrease but the sperm, I’m thinking, should still be fine. They’re created all the time. But women, yes. ID-13; female, aged 22, Canadian
[Men] can have babies until they die. ID-33; female, aged 21, Arab-Middle Eastern
Knowledge gaps were evident with eight women and two men, identifying ‘low sperm count’ as a cause rather than correctly identifying it as a manifestation/sign of infertility. Only one man and two women were unable to identify any causes for male infertility, with confusion of anatomy/physiology sometimes apparent.
I never knew men could be infertile to be honest, I guess malfunction of the penis. Being unable to I guess deliver the sperm to where it needs to go. ID-17; male, aged 19, Kuwaiti
I don’t know as much about infertility among men but maybe some accidents, like some things in the environment... If there’s damage to that anatomical part that’s caused by external things and also obviously maybe prostate cancer. ID-3; female, aged 22, Canadian
Infertility treatment: options, success
Both male and female participants identified multiple infertility treatment options. The major theme to emerge was IVF (14/23 women, 8/16 men) followed by sex-specific subthemes artificial insemination (4/16 men) and surrogacy (4/23 women, 3/16 men). Adoption was a dominant subtheme for both male (5/16) and female participants (13/23) and was perceived as an option in the event of infertility.
IVF seems to be popular these days. ID-26; female, aged 23, Indian
There’s artificial insemination, there’s hormones. In a lab, they get an egg and sperm. Yeah, they implant it into the uterus ID-9; male, aged 20, Chinese
Adoption, IVF, have someone else carry your baby for you… I forget what that is called. ID-30, female, aged 21, Irish
Women (14/23) and men (12/16) perceived IVF to have a ‘moderate’ to ‘high’ chance of success of producing a child based on its popularity and the skill of the physician.
I think on the most part it works, because a lot of people see it as an option. Don’t really know. I would assume so. ID-6, female, aged 21, Canadian
I think their chances are better just because it’s done by the doctors and the scientists when they put it together so it’s been proven to work many times - the success rate has been good so it’s more likely that it’ll work. ID-5, male, aged 19, Kuwaiti
Pretty high, maybe 80%. ID-27, female, aged 21, French-Canadian
Other respondents were aware that the process of conceiving a child through IVF can be arduous, uncertain and expensive.
I’d say be prepared that you just spent your money and it didn’t quite work. ID-2; male, aged 20, Canadian
I’d say unlikely. Yeah. Only from what I see with my own friends, then again, they only stop because of financial reasons. Like they might go three times, that’s like $20,000 every time, so that’s about all they give. ID-13, female, aged 22, Canadian
It works but I know that you have to try several times because the eggs are very sensitive and sometimes they can’t fertilize it properly. Sometimes when they insert the egg into the uterus then it might not work. ID-18, female, aged 22, Persian-Canadian
Men (10/16) were more likely than women (5/23) to perceive infertility as curable. Subthemes included the promise of technology and future developments.
Yes with all the new technology it should be. ID-28; male, aged 22, Ethiopian
Yeah, I think it’s possible. I don’t know, they’ve come pretty far with medicine, so I would presume there’s a lot of things they can do, especially with the new stem cell research and stuff. ID-8; male, aged 19, Chinese-Canadian
In the future probably. Now? No I don’t think so, there’s not enough known about it to cure everyone. ID-14, female, aged 21, Canadian
Almost all participants were familiar with IVF and were aware that infertility could be treated. Some participants expressed general awareness of the expense of infertility treatments and associated emotional stress. Important knowledge gaps included overestimation of the success rates of IVF and the ease/access of adoption.
In the event of personal infertility
Participants who expressed a strong desire to have children predominantly chose adoption (13/23 women, 12/16 men) followed by IVF (9/23 women, 10/16 men) as options for future infertility, with more men (7/16) settling for childlessness than women (4/23). Participants emphasized choices that were natural and expressed concerns about medication side effects.
Adopting and in vitro fertilization. Because the in vitro one, it seems like it has a very good success rate so there’s a pretty good chance that we’d have a baby. And adopting, if I wouldn’t be able to have child then I would want to adopt a child, make their life better – improve it, take them in. ID-5, male, aged 19, Kuwaiti
Adopting. Well I’ve kind of always wanted to adopt whether or not I was fertile or I would be infertile. And any of the other reasons, I really haven’t ..feel comfortable with some kind of scientific. Probably the actual procedure. I just feels, well I mean it is less natural. ID-19, male, aged 19, Ethiopian
No to surgery because that’s scary, IVF- I don't know what this is. No to medication and pills because they have side effects, I would want to adopt. ID-31, female, aged 22, Iranian
Choices in the event of personal infertility did not exhibit race/ethnicity patterns; instead treatment safety concerns, a desire for a ‘natural’ approach and the altruism of adoption seemed to influence participants’ selections.