“The worst time of my life”: Treatment‐related stress and unmet needs of women living with infertility

Abstract

Approximately 12% of women in the United States have difficulty getting pregnant or carrying a pregnancy to term (i.e., infertility). Infertility permeates women’s lives and is psychologically, socially and financially burdensome. This study aimed to describe women’s experiences regarding infertility and explore factors that women find helpful to alleviate their fertility‐related stressors. Using purposive sample, we conducted in‐depth qualitative interviews with infertile women. Participants reported multiple infertility treatment‐related stressors including (a) difficulty accessing infertility treatment due to financial issues, geographic disparities, and healthcare provider factors; (b) challenges during infertility treatment related to painful, embarrassing, confusing treatments, side effects, and healthcare providers’ failures to fully address women’s needs. The stories and findings add to a body of literature that elucidate significant stressors that women encounter in their fertility journey including a desire for empathetic, understandable, and effective treatment and support, and the crucial role of healthcare providers.

Infertility is a major public health issue. Approximately 13.1% of women aged 15–44 in the United States have impaired fecundity with approximately 7.3 million women having used fertility services (Centers for Disease Control and Prevention [CDC], 2016; Kessler et al., 2013). It is estimated that the incidence of infertility is likely to continue to increase over time (Shreffler et al., 2017). Research has documented the challenges women face related to infertility treatment. For example, limited access to infertility treatment has been documented in both developed and developing countries (Inhorn & Patrizio, 2015). Past research has demonstrated infertile individuals who are white, well‐educated, and have a high household income are more likely to receive treatment (Kessler et al., 2013; Shreffler et al., 2017). Fee‐for‐service or insurance copays have made in vitro fertilization (IVF) treatments inaccessible for many infertile women (Inhorn & Patrizio, 2015). For women in the United States, IVF treatment is the most expensive in the world and only 16 states provide insurance coverage (Inhorn & Patrizio, 2015; RESOLVE, 2018; Shreffler et al., 2017).

When IVF treatment is accessed, it not only has a financial impact, but also impacts relationships, lifestyle, and physical and emotional well‐being (La Rosa et al., 2020). For example, IVF treatment encompasses numerous invasive testing procedures such as blood draws and vaginal ultrasounds, as well as daily hormonal injections that have their own side effects. Finally, women must cope with pregnancy tests that may not indicate a positive result even after expensive, intensive, and exhausting treatment (Domar et al., 2012; Greil et al., 2011; Luk & Loke, 2015). The above‐mentioned factors are unpredictable, uncontrollable, and ambiguous which underscores how stressful infertility treatment can be for so many women (Hocaoğlu, 2018).

In addition to the challenges of treatment, infertility represents a life crisis for many women and requires psychological, emotional, and spiritual care (Zargham‐Boroujeni et al., 2014). Infertility can contribute to various negative psychological sequelae including isolation, frustration, depression, anxiety, hopelessness, guilt, and feelings of worthlessness, failure and inadequacy (Hasanpoor‐Azghdy et al., 2014; Hocaoglu, 2018). Couples expect informational, emotional, and tangible support from health professionals (Greil et al., 2011; Willer, 2014) and most couples needed psychosocial and counseling support during their treatment (Read 2014). Identifying psychosocial and counseling needs of infertile patients is of paramount importance to promote the health and well‐being of this population. Equally as important is developing and implementing tailored interventions that support psychological well‐being during this stressful process (Jafarzadeh‐Kenarsari et al., 2015). However, some research has documented that time constraints and other issues often prevent healthcare providers from attending to the psychosocial and counseling needs of infertile couples (Ying et al., 2015). Considering these needs and deficiencies, qualitative studies that are based on holistic philosophy and inductive reasoning are appropriate for assessing patients’ experience and their views on their needs (Jafarzadeh‐Kenarsari et al., 2015). To address this gap in the literature, we aimed to describe women’s experiences around infertility in the healthcare setting and to understand the barriers and facilitators to alleviate their stressors related to infertility. Research questions included (1) What are the experiences of women regarding infertility? (2) How can healthcare providers be sensitized to the obstacles and challenges that women encounter along their journey? And (3) What strategies do women use to alleviate their fertility‐related stressors?

Methods

Participants and procedure

This was a mixed methods study that had a survey component and qualitative interviews with a subset of participants. Recruitment included advertising the study in women’s health and infertility forums, Facebook support groups and other social media platforms. Eligibility criteria included (1) women who spoke English and were over the age of 18; (2) currently married or cohabitating with a partner; (3) attempting to conceive for the past year or more; and (4) willing to participate; (5) lived in the United States, (6) self‐reported a moderate or high stress level. All participants were recruited online. Interested participants were directed to click a web‐link on the study advertisement to participate in the survey portion of the study first. All data were collected between June and August 2018. The survey included questions regarding women’s current perceived stress level and infertility history. The survey also included a question asking participants if they were interested in being interviewed by researchers about their experience.

Women who volunteered for the qualitative phase of the study were contacted by a researcher, using only their safe contact information and instructions, to schedule a qualitative interview via phone or video chat, per the participant’s preference, at a safe and convenient time chosen by the participant. A total of 12 participants completed study interviews. The sample size was determined by data saturation, defined as the point at which themes were fully elucidated and no new information was shared. Thus, the interviews were terminated by the researchers, considering that sufficient saturation was achieved with similar responses after 12 interviews. The interviews were conducted by two researchers on the team (RO and TB). The interviews lasted an average of 45 min (ranging from 30 to 90 min). Participants were interviewed using a semi‐structured qualitative guide regarding their experiences with infertility treatment and health care settings, their stressors, and their coping strategies. University of Missouri Institutional Review Board approval was obtained for the study. At the conclusion of the interview, participants were offered a $25 electronic gift card.

Measures

A semi‐structured interview guide was developed by the researchers to collect the data. The interview guide was developed based upon extant literature and further refined for clarity and completeness based on feedback from infertility care providers and women who had experienced infertility (infertility specialist, fertility nurse, and a women health researcher who had experienced infertility treatment). To identify and elaborate on the experiences and challenges of infertility treatment within healthcare settings, the final version of the interview guide included open‐ended questions addressing the: (1) effects of infertility and treatment on their life; (2) stress and infertility processes; (3) experiences of treatment; (4) experiences and expectations from healthcare providers; (5) financial and other challenges associated with treatment; and (6) effects of the fertility treatment on their life.

Analysis

The analytic strategy was qualitative description, a dynamic form of analysis of verbal and visual data that is oriented toward summarizing the informational contents of that data (Graneheim & Lundman, 2004; Sandelowski, 2000). Consistent with Graneheim and Lundman’s (2004) approach, interviews were audiotaped, transcribed verbatim, and analyzed using a qualitative descriptive approach. Credibility, transferability, dependability, and conformability were assessed during all stages of analysis including the creation of codes to ensure rigor in the analysis (Forshaw et al., 2017; Lincoln & Guba, 1985). Before analyzing the data, two team members were trained on the qualitative description by a member of the study team who is an expert in this method. This training provided the basis for participant interviews and analysis that created a common approach among team members. All team members were introduced to the study context and the coding manual. Team members were then provided with sample interviews in which team members coded interviews together with a trainer (Chorney et al., 2015). After trainings, transcripts were verified against the original recording to ensure accuracy. Themes were identified by examining transcripts line by line. Team members underlined and labeled passages with tentative code labels. Similar codes were then grouped into subcategories followed by categories to create themes. These steps were performed several times such as reading, coding, contextualization, the categorization, and the compilation stage to maintain the quality and trustworthiness of the analysis by the authors (Bengtsson, 2016). Authors one and two independently coded four transcripts in Dedoose and compared the findings. Similarities and differences in the categories and themes were discussed by the team members, with an additional team member charged with reviewing more challenging discrepancies, which were then discussed until consensus was reached (Lundin & Elmerstig, 2015; Raskind et al., 2019). The remaining transcripts were coded by the first author, with new codes added to the initial codebook (Forshaw et al., 2017). Preliminary results were shared with all co‐authors for review (Raskind et al., 2019). Finally, the research team reviewed sample analyses according to the codebook. Differences and similarities were discussed by all the team members with differences being compared to the “gold standards” set by consensus (Chorney et al., 2015).

The research team reviewed all transcripts, axial codes and categories to reach concurrence on the final themes.

Results

Most of the participants had a diagnosis of female infertility; however, at the time of the interviews, two participants had not received official diagnoses. Women were relatively young (28.7 ± 6.3 years), mostly employed (75% full time), married (75%) and lived in urban area (91.6%). Most (83.3%) were diagnosed with primary infertility. On average, subjects had tried to conceive for about 3.42 ± 5.2 (1–8 years) years and had been under infertility treatment for 2.5 ± 3.9 years (1–8 years). Most (n = 10, 83.3%) had never had a live birth delivery (Table 1).

TABLE 1.

Distribution of the participants according to the demographic characteristics and fertility history

	Age	Living place	Marital status	Infertility years	Previous infertility treatments	Current treatment	Obstetric history	Working status	Insurance
P1	37	Urban	Married	2	IVF	IVF	Seconder Infertile 1 child 1 miscarriage	Full time	Insurance plan does not cover infertility treatment, it covers infertility diagnostic testing only
P2	32	Urban	Married	1.5	0	IVF	Primer Infertile‐ 2 pregnant losses	Full time	Have certain mandates for fertility coverage
P3	28	Urban	Married	8	0	Not having any treatment (Financial issue)	Primer Infertile	Full time	Insurance didn’t cover anywhere (covered a little bit)
P4	24	Urban	Married	2	0	IVF	Primer Infertile	Full time	Have insurance but not cover all (out of pocket expenses)
P5	37	Urban	Married	6	1 IVF	Planning second IVF	Primer Infertile Recurrent loss 3 miscarriages	Full time	Not having insurance
P6	32	Urban	Married	3	3 cycle IUI	Planning new treatment	Primer Infertile Miscarriages Recurrent Loss	Full time	Have insurance but not cover all (out of pocket expenses)
P7	36	Small town	Married	2	Medication treatment	Medication treatment	Primer Infertile	Full time	Have insurance
P8	25	Urban	Married	5	Medication treatment	Surgery	Primer Infertile Multiple miscarriages	Not work	Have insurance but not cover all (out of pocket expenses)
P9	22	Rural area	Married	2	Medication treatment	Medication treatment	Primer Infertile	Full‐time	Have insurance but not cover all (out of pocket expenses)
P10	23	Small town	Cohabiting	5	Diagnosed	Continue to treatment	Seconder infertile Have a Daughter	Not work	Have insurance
P11	24	Urban	Cohabiting	2	Medical treatment	Continue to treatment	Primer Infertile	Full‐time	Have insurance
P12	26	Urban	Cohabiting	1	Diagnosed	Planning IVF	Primer Infertile	Not work	Insurance companies don’t cover

Abbreviation: IVF, in vitro fertilization.

Participants reported multiple sources of treatment‐related stress. These included (a) difficulty accessing infertility treatment due to financial issues, geographic disparities, and healthcare provider factors. Healthcare provider factors were vast and included attitudes, communication issues, and lack of knowledge. Women also perceived challenges during infertility treatment related to painful, embarrassing, complex, and confusing treatments, side effects, and healthcare providers’ not addressing women’s psychosocial and informational needs.

Difficulties in accessing treatment

Financial barriers

Participants shared challenges they faced in obtaining infertility treatment, which were often substantial, chronic, and stress‐inducing. Financial costs were a major obstacle to treatment; all participants reported increased financial burden and stress related to these costs. Some women perceived the financial burden including dealing with insurance companies as more stressful than treatment itself (which they also generally identified as highly stressful). All participants reported difficulty affording treatment. Two participants reported selling belongings or property to cover the costs of treatment. Another revealed that even with earning a high income, she was still unable to afford treatment. It was noted by many of the women interviewed that their health insurance was insufficient to cover many aspects of infertility diagnosis and treatment. For example, some plans only covered diagnosis, not treatment. Other participants reported substantial co‐pays and out‐of‐pocket expenses, disparities in cost for male vs female infertility (i.e, male infertility was more expensive), or insurance barriers for same‐sex couples. One participant described her financial stress related to poor coverage:

If they would cover it, it would be more access to this. So much stress would be off of our shoulders if we were like, yeah, we could just go and do IVF and see what happens and not spend seventeen grand on it.

Geographic disparities

Three participants further identified that the rural settings in which they lived created physical and financial barriers to accessing infertility care due to the distance of the nearest treatment center.

There’s not specialists everywhere in the country. There’s only specialists in big urban centers and not everybody has access to the care that.

There are no IVF clinics and there’s no sperm cryopreservation here and so I have to leave here to get it and so then like it becomes a matter of not just what’s close by or what’s affordable.

One participant had never been able to afford infertility testing and treatment due to her financial situation, despite being unable to conceive for the past 7 years. The financial costs substantially delayed treatment for others. As one reported, “I wanted to go to the doctor and that was expensive, and that puts stress on us. I didn’t go for many years, because that was so expensive.”

Healthcare provider factors

Additionally, some participants encountered major obstacles accessing treatment specifically because of barriers related to healthcare providers and their practices. Some had longstanding symptoms related to underlying health issues that were ultimately determined to be the cause of the infertility. Yet, many women reported that healthcare providers invalidated their concerns:

When I told her I didn’t feel right on my medication, I always had anger issues. Heart was palpitating a lot. She kept telling me all the symptoms were in my head and I didn’t like it very much and I haven’t been back to see her…

First, participants reported that primary obstetricians, who were key frontline providers, often did not perform fertility workups despite women’s expressed concerns. Instead, participants often went substantial amounts of time without accurate diagnoses or treatment, to their immense frustration. As one said:

Let’s look at your hormones and what hormones are often checked…let’s check your thyroid and let’s check your blood sugar level. Your A1C, you know, insulin resistance. No, we just want to first shove birth control down your throat.

Some complained that obstetricians appeared to lack expertise on infertility (including polycystic ovarian syndrome, or PCOS) or pharmacologic treatment and related side effects, and perceived these providers as themselves presenting barriers to care:

I think that OBs should be better trained about their own limitations. They should be better trained about this stuff in general. There’s no reason why I have to go to our fertility endocrinologist to check my cycle day 30, or cycle 12 labs. OBs can easily learn how to interpret for normal, or not normal, and then know who to refer up.

Women who were marginalized in healthcare settings felt that they faced even greater barriers to accessing care, because of provider biases or blind spots. For example, one woman who had been trying to conceive for years without success felt healthcare providers did not listen to her because she was young (i.e., mid‐twenties):

I think some doctors don’t take this as serious. They’ll say ‘keep on trying you’re young or still have time’… I had to research and find help on my own.

Difficulties during fertility treatment

Painful, embarrassing, complex, and confusing treatments

Participants were asked to share stressful or difficult experiences related to infertility treatment. First, they reported that treatment was exceptionally all‐consuming, stressful, and difficult.

As one described it:

My life is forever changed and it will never be the same. I see my RE [reproductive endocrinologist] more often than I see my mother. Focusing on work can be difficult. Wanting to be social can be difficult.

Another noted: “It’s super time‐consuming. Everything changes quickly (drugs, appointments, etc), and we can’t anticipate how we’re going to feel or manage engaging in fertility treatments.”

The stress women felt was further magnified by the uncertainty of treatment outcomes. One woman noted, “fertility treatments like IVF can be costly—emotionally, physically, and monetarily—and still offer no guarantee.” As women did not experience their treatment in a vacuum, many also reported having other life crises during this time (e.g., work, family, etc.) that caused major distress. As one reflected on treatment, she said “… it was just one of the worst experiences I’ve ever had in my life.” Women also experienced negative physical and psychological side effects related to hormonal drugs taken as a part of treatment, such as fluctuating moods and emotions, sleep disturbances, severe back pain, nausea, and hair loss. One reported, “the treatments make you feel horrible. My body reacts poorly to hormone treatments and it made the infertility worse than not being able to get pregnant in the first place.” Another said:

“…the medication plays with your hormones until you feel like crying at times where maybe you wouldn’t normally cry. And you don’t sleep right and sometimes I feel nauseous and so I’m not eating as much as I normally would.”

The complexity of treatment protocols also contributed to participants’ stress. Many had difficulty understanding and accessing information about the protocols and drug regimens used in the treatments, leaving them feeling helpless and exhausted:

Really, IVF is high drama—like it changes every day. It really does, like even going into my appointment today thinking that everything was gonna be fine, and then like, oh shit, I have this. What does this mean? And I got my FSH trigger back and they’re elevated. And my protocol is different. What does this mean for my body and for my future, for my children? Like it’s really high drama, like every step of the way.

Healthcare provider factors

Unfortunately, for many participants, healthcare provider factors also presented as challenges and caused added distress during their treatment. A common theme emerged that almost half had changed providers (fertility specialists) during treatment due to healthcare provider factors. Still others identified difficulty with finding providers for treatment that they can trust.

It was often difficult for participants to schedule an appointment or talk to their infertility treatment providers during treatment, due to full provider schedules and large number of patients seen. One woman described feeling “lost and helpless”. Healthcare provider time constraints often resulted in rushed visits and women left feeling unheard. As one said, “It’s hard because it’s like you go for answers or for help—and they don’t even listen to you.”

Inconsistent or missing information during infertility treatment was another common stressor, which over time also disrupted their trust in healthcare providers:

And it would really frustrate me like, because they would all tell me something different…And it was hard because I took each nurses word, I was like, okay, this is the truth, this is the truth. And it was really hard for me to sort out what was actually true., I don’t like if I just don’t believe all the nurses anymore. I don’t know.

Many reported that they did not find their healthcare providers empathetic and understanding, or found them overly focused on physical symptoms while paying little attention to their emotions. One described the trauma of losing multiple pregnancies as further compounded by her infertility doctor’s reaction, which she perceived as shutting her down: “Oh, we’re not the one who handles emotions. Go talk to the place where they handle emotions.” Another said:

We’ve been to two fertility clinics and the first one was awful. Really. The doctor we had‐she did not have the best bedside manner to do this job. Like if we were in her office crying about test results, she would literally hand us a box of tissues and say coldly: “A lot of women find these subjects are emotional.”

It is also important to note that three participants had found infertility care providers (sometimes after changing from other providers) whose care they described as satisfying. As one described her infertility provider: “he has been the best person that I had ever met.” In these cases, providers were described as attentive. These participants reported their providers listened to their concerns, explained the treatment steps, made time for them, and took their emotional state seriously.

Coping with stress

Therapy and counseling

Women were asked what helped them most with their stress. Most received some form of counseling while in the process of infertility treatment. Many shared they experienced a closer relationship with their therapists than with their infertility practitioners due to the amounts of emotional support received.

She was the first person that actually seemed like she understood enough to even start the conversation with. I didn’t have spent weeks explaining what this meant and what it was and why it would be upsetting.

However, a common theme in interviews was that the costs created a barrier to accessing counseling, particularly in the context of the high financial burden women faced for infertility treatment. Some interviewees felt counseling should be included as a part of infertility treatment, for both women and men. One said:

I think a therapist should 100% be a part of the infertility process. You need someone who you can vent to that is confidential where you can share your fears, stresses, and sadness. Other people are not equipped to handle those conversations and it puts the sharer at risk of being told something insensitive.

Online support groups

Women often turned to online infertility support groups, primarily consisting of other women, which afforded them the opportunity to seek and give support. Two women reported in some groups, women would donate leftover infertility drugs to others to offset expenses. Online groups also became a source of information regarding infertility diagnosis and treatment protocols:

I looked for people who are kind of going through what I’ve gone through and I searched for. What do you wish you knew before you started IUI? What do you wish you’d known before you started IVF and kind of look for advice?

Women reported the provision of mutual support and sense of shared camaraderie helped reduce their feelings of isolation, and sense of stigma attached to infertility. Participation in these online groups elicited feelings of hope from shared infertility success experiences.

Discussion

Participants in this study reported significant stress, and multiple sources of stress, related to infertility treatment. They often faced substantial difficulty accessing treatment (in many cases, for years) due to financial issues, geographic disparities, and healthcare provider factors, such as negative attitudes, communication issues, and a lack of knowledge of psychosocial needs. Once women were able to access infertility treatment, they experienced significant stress and challenges related to the painful, embarrassing, complex, and confusing treatments and side effects. This stress was often compounded by their healthcare providers’ not addressing their psychosocial and informational needs. In our study, nearly half of participants had changed providers at least once in an effort to find more empathetic and supportive care. Participants often lacked social support from friends and family, and discussed the coping strategies that helped them deal with treatment‐related stress, particularly therapeutic counseling and online support groups that primarily consisting of other women living with infertility. A primary complaint from participants was related to financial distress related to treatment. Many in this study reported limiting living expenses, or selling personal property to afford treatment. Prior research has shown only half of infertile couples in the US are able to afford treatment (Inhorn & Patrizio, 2015; Kessler et al., 2013), with little progress for the uninsured or underinsured (Berger et al., 2013). Financial burden may be a main factor that contributes to treatment delay or dropout (Mosalanejad et al., 2013; Zargham‐Boroujeni et al., 2014). One of our participants poignantly said, “It’s not a ‘want.’ Having a family is a human need.” The stories of the women in this study underscore the distress that is caused by financial burdens of infertility treatment. Some have suggested that reproductive rights must include providing equal and “universal access to infertility care” (Inhorn & Patrizio, 2015; Ombelet, 2013), with infertility treatment access viewed as a human right, made affordable and covered by insurance.

Infertility treatment has been described as a “time‐consuming experience,” a “second job,” and an “obsession” (Ying et al., 2015; Zarinara et al., 2016), and has been reported to cause higher levels of emotional distress than the actual experience of infertility (Willer, 2014). Informational support should be provided through providing quality information based on each stage of treatment (Domar et al., 2012). Prior research suggests women with infertility want more information about complex and confusing treatment protocols and medication side effects (Domar et al., 2012; Ying et al., 2015), and our participants expressed these needs as well, underscoring an important way that providers can better support women during infertility treatment.

However, information is not likely entirely adequate to reduce treatment‐related stress. A successful pregnancy is not guaranteed (Gleicher et al., 2019), and loss of a pregnancy during treatment may be experienced as loss equivalent to the death of a child (Davidson, 2018). Many of the women in our study experienced recurrent losses, causing grief, frustration, shock, surprise, heartbreak, denial, sadness, and anger, and in one case, suicidality. Pregnancy loss is the most significant cause of distress, anxiety, and depression during infertility treatment (Schwerdtfeger & Shreffler, 2009) and is a risk factor for posttraumatic stress disorder development and suicidality (Davidson, 2018; Schwerdtfeger & Shreffler, 2009). Most of our participants had little emotional support from friends/family and from healthcare providers in dealing with these losses, as has been reported in other studies (Jaffe, 2017; Read et al., 2014).

Indeed, healthcare providers themselves were significant stressors for some women, even sometimes representing barriers to receiving infertility diagnosis and treatment. While some women did report positive provider experiences, most experienced a lack of understanding, emotional support, communication and information, and in some cases perceived biases related to their weight, age, or sexual identities. Other studies have demonstrated a gap in provider care related to the provision of empathy, emotional support, and compassion (Jansen and Onge, 2015; Landbloom, 2016; Willer, 2014). Other research has also demonstrated the importance of meeting the emotional needs of the infertile couple. In one study, the primary reasons infertile couples stopped treatment were the psychological burden of treatment (72%) and the lack of staff empathy (32%; Van den Broeck et al., 2009). Clearly, unmet needs for emotional support and patient‐centered care are important to achieve treatment success regardless of the medical reason for infertility, and are mirrored by women’s reports from this study. Infertile women desire compassion and empathy, open lines of communication, and information about their treatment (Landbloom, 2016; Smith et al., 2012; Willer, 2014). We suggest that providers who wish to reduce women’s stress during infertility treatment should consider adopting a patient‐centered care frame, as has been suggested by other researchers (Dancet et al., 2011).

Some women avoid professional counseling due to stigma or unreadiness (Read et al., 2014), but women in this study generally reported counseling was one of the most helpful strategies they used to cope with treatment‐ related stress, grief, and loss. However, our participants often had not received counseling referrals, and often counseling represented another difficult financial burden. Research suggests counseling may not only improve infertile women’s well being, but also pregnancy rates. Other options to meet psychological needs could include peer support groups (Read et al., 2014; Rooney & Domar, 2018). Although guidelines suggest that psychological counseling during infertility, in‐clinic psychosocial support services are rarely offered during IVF treatment (Gameiro et al., 2016; Patel et al., 2018). Some of our participants expressed professional counseling should be a standard component of treatment; we suggest a practice implication for infertility providers wishing to provide truly patient‐centered care and increase patient satisfaction may be to consider ways in which they can effectively facilitate women’s access to such services in‐clinic.

In this study, online support often replaced the informational, emotional, and social support women did not receive from their social circle or their infertility care providers. Women noted that online support groups helped reduce the stigma associated with infertility due to shared experiences creating a normalizing effect. The use of the internet for health or medical information or for support and sharing provides a sense of “diversity, accessibility and anonymity” and a source for coping, empowerment and improved well‐being (Domar et al., 2012; Jansen & Saint Onge, 2015; Lundin & Elmerstig, 2015). Although there are some concerns about the unreliability of information and advice found on these websites, online support groups may offer tangible benefits (Gazit & Amichai‐Hamburger, 2020; Lundin & Elmerstig, 2015). Providers may consider educating themselves on these online support groups, and how they might further support patient‐centered care and address patients’ psychosocial needs by sharing information about groups with infertility patients – with the caution that some medical information and advice may be inaccurate and an open invitation to bring questions and concerns back to the practice.

Limitations

A few limitations should be noted. This manuscript presents findings from in‐depth interviews with a small convenience sample of infertile women. This approach presents some obvious limitations, including the non-representativeness of the sample. However, we note that there is a general dearth of research related to infertile women’s stress, and in particular of qualitative research representing the stories and voices of women living with infertility. The richness and depth of women’s experiences are conveyed well in the stories and exemplars in our data, and our findings can be clearly placed within the extant literature, lending further credibility. We suggest more research is needed, including larger sample sizes and mixed‐methods approaches, to further elucidate infertile women’s stress and identify and test the most effective and feasible interventions to support them in successful and supportive treatment. In the study, another limitation can be that it was not covered regarding the race and/or ethnicity questions. For future study should be included a race/ethnicity variable which can be a predictor of health and mental health outcomes. In addition, two members of the study team participated in both the interviewing and coding phases of the study which may have biased results. However, two other members of the study team were involved in interviewing and coding processes separately which might be ensured to reduce the bias by presenting objective perspectives with these different researchers.

Conclusion

Infertility and its treatment have challenges and negative consequences for women’s financial statuses, mental health and well‐being. It is clear from the women’s perspective that accessible and affordable infertility treatment would substantially reduce stress. It is equally clear that providers need to be empathetic and understanding, and provide both informational support and emotional support, including access to counseling, support groups, and online forums to promote mental health and well‐being during this difficult time.