Abstract
Keywords
Introduction
Approximately 30% of women who undergo fertility treatment do not achieve parenthood (Gameiro & Finnigan, 2017). The journey is uncertain and often arduous, leading to significant psychological distress for many women. The literature reports elevated levels of anxiety and depression, decreased general and fertility-specific quality of life, decreased social support, and decreased marital or relationship satisfaction (Bhat & Byatt, 2016; Verkuijlen et al., 2016). The incidence of anxiety and depression in infertile couples is significantly higher than in fertile controls and in the general population, with anxiety in 12% to 38% and depression in 2% to 54% of women in fertility treatment as measured by standardized scales, and suicidal ideation in 9% to 13% of women undergoing in vitro fertilization (IVF) (De Berardis et al., 2014; Shani et al., 2016). While there is some evidence to suggest that stress also has an impact on fertility treatment outcome, studies investigating the impact of psychological factors on pregnancy rates have conflicting results (Rooney & Domar, 2018).
Meta-analyses and systematic reviews of the many studies evaluating psychological interventions for women with infertility have inconsistent conclusions (Boivin, 2003; Chow et al., 2016; Frederiksen et al., 2015; Hämmerli et al., 2009; Rooney & Domar, 2018; Verkuijlen et al., 2016; Ying et al., 2016). One of these was a Cochrane review assessing the effectiveness of psychological and educational interventions for “subfertile” men and women on psychological and fertility treatment outcomes (Verkuijlen et al., 2016). This review included 39 randomized controlled trials involving 4,925 participants undergoing assisted reproductive technology (ART). The psychological interventions varied widely and included: hypnosis, “body-mind(-spirit)” and mindfulness interventions, a nursing intervention, an internet-based health promotion model, cognitive (behavioral) therapy, expressive writing, counseling, an interview with positive statement reading, interpersonal therapy, music therapy, a positive reappraisal coping intervention, relaxation therapy, and psychotherapy. As these trials were generally poorly designed and executed, resulting in serious risk of bias and inconsistency in study findings, the authors concluded that the effectiveness of these interventions was uncertain.
Thus, the psychological impact of infertility and fertility treatment is often profound, yet the effectiveness of existing psychological interventions is unproven. Alternative approaches to psychological support may be valuable. One possible type of psychotherapy which has not been assessed for women with infertility and women in fertility treatment is existential psychotherapy. Existential psychotherapies have been developed for other medical populations whose core concerns include suffering, uncertainty, and loss, including women with breast cancer (Kissane et al., 1997, 2003; Spiegel & Spira, 1991), patients with other cancers (Breitbart et al., 2010, 2015), persons with inflammatory bowel disease (Maunder & Esplen, 2001), and women with a family history of breast cancer (Esplen et al., 2018).
Given the lack of clear benefit of other psychotherapeutic approaches for this population, it is relevant that existential therapy is distinct from other modalities. Rather than aiming to cure mental disorder or to modify current behavior, existential psychotherapy emphasizes exploration and re-examination of one’s view of themselves and their world in order to promote authentic living (Spinelli, 2006; Spira, 1997). Existential psychotherapy is concerned with an individual’s confrontation with the “givens of existence” (Yalom, 1980). Reflection on these “givens of existence” or “ultimate concerns” is often catalyzed by certain urgent experiences or crises, such as a confrontation with one’s own death, some significant irreversible decision, or the threatened loss of some fundamental source of meaning (Yalom, 1980).
There are some indications in the existing literature that an existential perspective could be apt for women with infertility and women in fertility treatment. First, the experience of infertility or fertility treatment itself may constitute a psychological crisis. Furthermore, the qualitative and theoretical literature suggests that the crisis of infertility is existential in nature (Boz & Okumus, 2017; Gerrity, 2001; Lee et al., 2012; McCarthy, 2008). Common themes that have been identified include the unrealized “wish to extend [oneself]” (Lee et al., 2012, p. 313) beyond the limits of mortality through childbearing (Lee et al., 2012; McCarthy, 2008); uncertainty and lack of control (Bergart, 2000); the impact of infertility on the self and womanhood (Giuliani, 2009; Tsui & Cheng, 2018); the impact of infertility on marital, familial, and social relationships (Gerrity, 2001; Glover et al., 2009); reordering life values and personal goals (Gameiro & Finnigan, 2017; McCarthy, 2008); and finally, searching for meaning in the experience of infertility and potential childlessness (Gameiro & Finnigan, 2017). A brief overview of the existential position, provided below, suggests that many of these themes can be understood through that lens. Although these themes have been identified, no existential model of the experience of infertility and fertility treatment has been developed. Nor have the lived experiences of those with infertility or in fertility treatment been systematically assessed to determine if they are well-represented by an existential understanding of their experience.
While there have been several literature reviews on the lived experience of infertility and fertility treatment (Boz et al., 2018; Gameiro & Finnigan, 2016, 2017; Janković & Todorović, 2021; Maehara et al., 2022; Romeiro et al., 2017), some of which have alluded to existential elements—for example, the impact on one’s sense of self and identity (Janković & Todorović, 2021)—none have focused specifically on women’s experience from an existential perspective. Furthermore, some reviews have focused on only certain aspects of the experience, such as spiritual aspects (Romeiro et al., 2017). Others have focused on only experiences within a particular context, such as experiences of transition to motherhood following successful fertility treatment (Boz et al., 2018; Maehara et al., 2022) or, conversely, psychosocial adjustment after failed treatment (Gameiro & Finnigan, 2016, 2017). As such, these reviews have limited use in understanding the existential challenges of women with infertility and women in fertility treatment.
This paper explores the existential challenges of women with infertility and women in fertility treatment by reviewing their lived experience from an existential perspective. Furthermore, this review aims to generate an existential model of women’s experience of infertility and fertility treatment that could potentially be used to develop novel existentially oriented psychological interventions to better support this population.
There is no single theory or framework which encompasses all existential concerns. As it was Irvin Yalom (1980) who brought existential psychotherapy into the forefront of contemporary psychotherapies aimed at addressing existential concerns (Breitbart, 2017), his existential framework is particularly useful. Yalom described existential psychotherapy as addressing four ultimate concerns of human existence: death, freedom, isolation, and meaninglessness. One’s confrontation with death invokes the tension between the awareness of the inevitability of death and the wish to continue to be. Fertility treatment involves a symbolic confrontation with death because the possibility of childlessness threatens the prospect of living on through one’s offspring (Lifton, 1973). Furthermore, women in fertility treatment often experience loss and grief. The ultimate concern of freedom concerns the clash between our awareness that each of us is responsible for determining our destiny and the security provided by the idea that our life has an inherent design. Security may also be found in adhering to social conventions, such as the social convention of motherhood. The third concern, isolation, addresses a universal human conflict between our awareness of our absolute isolation (we enter and leave this world alone) and our wish to be part of a larger whole. It is relevant to this concern that the experience of infertility and fertility treatment has been described as involving “alienation from the fertile world” (Boz & Okumus, 2017, p. 272; Loke et al., 2011, p. 510). A fourth ultimate concern is meaninglessness. Here, the existential conflict stems from the dilemma of being a meaning-seeking being who is thrown into a universe that has no apparent meaning, forcing each of us to construct our own meanings in life. Women in fertility treatment are facing the prospect of a future without longed-for children and, thus, the potential loss of meaning and purpose provided by motherly devotion (Gerrity, 2001).
While a life crisis gives rise to existential questions and challenges, it also provides an opportunity for self-discovery, authenticity, and meaning-making. Crisis often leads to contemplation of our images of ourselves and the world, potentially resulting in greater consciousness and, thus, greater freedom to identify, choose, and engage in activity that provides meaning (Spira, 1997). Thus, for women in fertility treatment, confronting one or more of these four overlapping and interconnected concerns may also provide an opportunity for personal growth.
Rationale
Although there is support for the view that women with infertility and women in fertility treatment experience existential challenges, there is no existing review of primary qualitative research to provide a comprehensive model of their experience from an existential perspective. We reviewed the qualitative literature in this area to answer two questions: What are the existential concerns of women with infertility and women in fertility treatment? Can these concerns be synthesized in a model that would support the development of an existentially oriented psychological intervention for this population? Due to gender differences regarding the socialization towards parenthood and the meaning of childlessness (Glover et al., 2009), this review focuses solely on the experiences of women. For the purposes of this review, “women” is restricted to a narrow gender categorization that correlates with sex assigned at birth. While this narrow definition is now recognized as being problematic (Hankivsky et al., 2010), it is typical of the literature being reviewed. Furthermore, while not all women undergoing fertility treatment have infertility, the literature tends to treat the infertility population and the fertility treatment population as one and the same. As such, we adopted the same convention for the purposes of this review.
Methods
This review is a qualitative evidence synthesis, specifically a best fit framework synthesis (Carroll et al., 2011). Five databases (MEDLINE, EMBASE, Web of Science, PsycInfo, CINAHL) were searched across all years up to April 2023. Search terms were variations of (infertility OR fertility treatment) AND (anxiety OR depression OR psychological distress OR existential OR grief OR isolation OR self-concept OR meaning) AND (qualitative OR interview). The detailed search strategy for one of the databases (MEDLINE) is available in Supplemental File 1. Qualitative research studies in English were included if their results included verbatim quotations from women, either from interviews, focus groups, or textual data (diary entries, online posts), addressing one or more of Yalom’s (1980) existential concerns. Studies focusing on infertility and fertility treatment in the context of cancer and trans parenthood were excluded, as these two contexts are thought to potentially evoke existential challenges distinct from those associated with infertility and fertility treatment. Studies focusing solely on men were also excluded. Carroll et al. (2011) identified four key quality criteria, namely a clear description of the question and study design, and the methods of sampling, data collection, and analysis. In this synthesis, while all qualitative methodologies were allowed, studies that failed to meet any of the four quality criteria were excluded.
Two of the authors (initials suppressed for anonymized review) independently screened the first 50 titles and abstracts for relevance in order to establish reliability of inclusion/exclusion decisions. Disagreements and uncertain inclusions were resolved by discussion. The same two authors independently screened the next 50 titles and abstracts with 94% agreement (Fleiss’ weighted kappa = .85). The remaining citations and abstracts, as well as full papers of all potentially relevant studies were screened by the primary author. Quotations were extracted by the primary author from the Results sections of included studies. While some studies included men and healthcare professionals, only quotations attributed to women with infertility and women in fertility treatment were extracted.
The best fit framework synthesis method involves using a pre-existing conceptual model as the basis of the initial coding framework and deductively populating this a priori framework with relevant data from the included studies. Next, the remaining relevant data are inductively synthesized using the approaches of thematic synthesis to develop new themes until all the relevant data are accounted for, producing a revised model (Carroll et al., 2011; Dixon-Woods, 2011; Flemming & Noyes, 2021). The framework synthesis approach was necessary because this review aimed to look at women’s experience of infertility and fertility treatment from an existential perspective, and built on an existing existential framework. Within this methodology, the “best fit” approach (Carroll et al., 2011) was chosen because no published model was available that conceptualized the existential concerns of women with infertility and women in fertility treatment. Instead, following a method similar to Carroll et al. (2011), a general existential framework determined to be the “best fit” was identified and then applied to this population. As Yalom’s (1980) existential framework addresses psychological issues as opposed to philosophical aspects of existential thought, it provided a relevant pre-existing framework with which to synthesize the literature and produce a psychologically relevant model. His existential framework (1980) was used to generate a priori themes adapted to the experience of infertility and fertility treatment against which to map and code the data extracted from the included studies (see Table 1). In keeping with Carroll et al.’s (2011) method and in order to understand the subjective experiences of the women, data for analysis were limited to verbatim quotations from study participants. Relevant quotations that could not be coded using the a priori themes were synthesized inductively using Braun and Clarke’s (2006) approach to thematic analysis to develop additional themes. This approach involves: familiarizing yourself with the data, generating initial codes, searching for themes, reviewing themes, and defining and naming themes (Braun & Clarke, 2006). The qualitative analysis software NVivo aided in the thematic organization of the data.
A Priori Themes Reflecting the Existential Concerns of Women With Infertility and Women in Fertility Treatment.
Data Analysis and Results
Of 1,506 studies screened, 144 satisfied inclusion criteria (see Figure 1). These studies included women from 34 countries spanning six continents. In addition to covering a wide range of geographical and cultural contexts, these studies also included varied contexts with respect to the type of fertility treatment (e.g., intrauterine insemination, IVF, third-party reproduction using donor gametes), treatment outcome (e.g., the experience of miscarriage, involuntary childlessness after failed treatment, transition to parenthood following successful treatment), and the type of parenthood (e.g., heterosexual, lesbian). A total of 1,595 quotations were extracted. A combination of coding against a priori themes, and the generation of and assignment of data to new themes, produced the complete list of themes and sub-themes reflecting the existential concerns of women with infertility and women in fertility treatment (see Table 2). A description and exemplar quotation for every sub-theme can be found in Supplemental File 2.
Flow diagram of study screening and selection.
Themes and Sub-Themes, Both a Priori and Additional, Reflecting the Existential Concerns of Women With Infertility and Women in Fertility Treatment.
Sixteen a priori themes were each populated by numerous quotations from the primary studies deductively. Quotations not coded into the a priori themes were synthesized inductively to develop 13 additional themes, resulting in a total of 29 themes. Of these, 16 themes were further differentiated into 68 sub-themes. Fourteen of the 1,595 quotations were deemed to be irrelevant and were excluded.
Based upon the women’s narratives, a description of the existential concerns of women with infertility and women in fertility treatment is provided below.
Loss and Grief, and the Threatened Loss of Symbolic Immortality
Women undergoing fertility treatment may literally encounter death (e.g., miscarriages), and often experience loss in the form of failed treatments and menstruation indicating a failed treatment. In addition to these tangible losses, many women grieve the loss of certain dreams and ideals, such as having a longed-for child, having a genetic connection to their child, conceiving naturally, and experiencing pregnancy: What I learned the most was to really empathize with people and the experience related to loss … to lose a fantasy or a dream is as much a loss and can be just as painful as losing a loved one. (Benasutti, 2003, p. 65)
Furthermore, their grief is often disenfranchised as it is not socially acknowledged, mourned, or supported (McBain & Reeves, 2019).
While these women do not confront their own death, they confront the threatened loss of their symbolic immortality, which refers to the continuity of the self beyond death: I wish to extend myself, [otherwise] I will disappear from this world totally. …. (Lee et al., 2012, p. 313)
Indeed, reproduction can be thought of as a means of “reproducing” one’s self: [I]t’s an incredible urge to have children … It’s just a natural desire and a natural instinct to reproduce oneself. (K. Bell, 2013, p. 290)
Similarly, reproduction is a means of ensuring one’s legacy, and the continuity of one’s family lineage and heritage. Numerous quotations reflect the value placed upon genetic attachments and the challenges of navigating non-genetic parenthood, especially challenges around non-resemblance: I had to mourn the loss of my biological child. … For the longest time I just couldn’t fathom doing adoption; I almost would rather be childless. (Czarnecki, 2015, p. 733) I always thought of it. What about if the child resembles the real mother and not me? What about if the child has a different face from ours? I said that my husband and I have both white bright skins; what about if the child has a dark complexion? This thought did not leave me even for a moment. (Zandi et al., 2020, p. 186)
For some women, having a genetic attachment to their child is important to maternal identity. For others, particularly those navigating non-genetic motherhood, pregnancy and nurturing are important in terms of viewing one’s self as a mother and seeing one’s child as belonging to them: In the end I carried the pregnancy and gave birth to the child, it was my blood streaming through (…) it’s a little piece of genetics where the rest is done by me. (Indekeu et al., 2013, p. 128)
Childbearing is a means of ensuring the continuity of not only the self and heritage, but also the human race (Meyers et al., 1995, cited in Gerrity, 2001). Women’s narratives reflect the pressure they perceive from society to have children, the view that parenthood is a natural part of life and of the transition to adulthood, and the negative assumptions and judgments of others for not having children or more than one child: I’m meeting a lot of people, and the question always comes up, “Do you have children? Well, you guys have been married for awhile, how come?” (Bute, 2009, p. 757)
Along with these challenges, the loss and grief associated with infertility and fertility treatment act as a catalyst to propel some of these women to create a legacy beyond genetic motherhood, and enhance their appreciation for life: I don’t want to erase that chapter of my life, either, because I think that it did me a lot of good. I regard the whole process as very positive catalyst. (HaCohen et al., 2018, p. 726)
The Powerlessness to Direct One’s Life
The experience of infertility and fertility treatment also gives rise to a sense of powerlessness. Women describe frustration with their lack of control over their fertility, aspects of their fertility treatment, their treatment outcome, and their life in general: I feel like a puppet … Who controls the reins of my life? (Boz & Okumus, 2017, p. 271)
Other sources of frustration include their lack of control over their body, as well as their lack of privacy with regards to their body and sex life. For many women, the need for fertility treatment alters their life course.
In response to this powerlessness, some women report an enhanced commitment to parenthood. Some view their infertility, and treatment success or failure, as the will of God, their destiny, or, in some cultures, the result of witchcraft, while some blame themselves. Others adopt an attitude of self-determination and are unwilling to accept treatment failure: I want to believe there is something up there that is going to help me. That there is someone somewhere, some power that’s going to decide. You are what you make yourself. And that your fate is determined by, it’s a product of your efforts, of what you do. … At this point [praying] won’t hurt. But it’s hypocritical. (Sandelowski, 1987, p. 72)
Many women pursue progressively more advanced treatments and struggle with the decision to stop treatment despite repeated failures. Their descriptions highlight the all-consuming nature of fertility treatment, as well as the importance of maintaining hope.
Barriers to treatment also pose a challenge as women attempt to exercise free will and self-determination in their pursuit of motherhood. Based upon the women’s narratives, such barriers include the cost of treatment, limited donor options, laws which prohibit or limit the provision of certain treatments in some countries, laws and practices which discriminate against same-sex couples in some countries, and personal values and beliefs which prohibit the use of certain treatments: … when I called his reception she was like “who’s your husband?” and I say “no I have [a] same sex partner” and she “well we won’t see you then” I [thought] … oh that’s right ‘cause I’m a lesbian I forgot about that. …. (Chapman et al., 2012, p. 1881)
Tolerating the inescapable uncertainty of infertility and fertility treatment is another challenge. These women face numerous unknowns, including the cause of their infertility in some cases, whether or not their treatment will be successful, and their uncertain future: I hate it, I hate the not knowing, I’m, … I can’t, I like to know where I’m going and what I’m doing and I can’t stand the not knowing whether it will work or not, I think it’s awful … I can’t do anything about it, …. (Glover et al., 2009, p. 409)
There is a sense that their life is in “limbo” or on hold. They describe vacillating between hope and disappointment, as well as difficulty tolerating the waiting period between receiving treatment and learning whether or not it was successful. They also experience anxiety about the potential for a treatment failure or miscarriage, and sometimes disbelief when they become pregnant following repeated failures or miscarriages.
Prescribed gender roles and society’s motherhood mandate further contribute to the challenges these women face. The idea that women should become mothers limits women’s freedom by dictating their life course, leading to consequences for those who either do not want or cannot have children. Furthermore, the idea that motherhood is inherent to womanhood limits their freedom by dictating what is required of them to be feminine. According to their narratives, many of these women have internalized the view that motherhood is the goal of all women, the primary role in a woman’s life, and a necessary requirement for a woman to be happy and achieve full womanhood: And it’s—it’s extremely hard as a woman to realize that you may never be able to have a kid. And it’s—it’s kind of that thing that that’s what makes a woman a woman. It’s kind of like the message we’ve been taught our entire lives and that part of me says, “Yeah, that’s true. I’m not really 100% a woman if I can’t have a kid.” (A. V. Bell, 2019, p. 637)
Their narratives also speak to society’s tendency to view infertility as a woman’s problem and to assume that the woman is to blame. Some women view selflessness as a defining aspect of motherhood, and some associate both childlessness and single parenthood with selfishness. Overall, they question their alternative direction in life in light of potential childlessness.
At the same time, the powerlessness these women experience provides an opportunity for acceptance, personal growth, and the pursuit of other life goals: Even though everything has been a struggle, felt unfair and I’ve battled against anxiety, fear, tiredness, not knowing, bitterness and envy amongst other things, I’ve become stronger. I’ve lost a lot, but I’ve also gained a lot. I’m grateful for what I have now. (Lehto et al., 2019, p. 450) I think it’s been a choice, definitely. I’d like to emphasise the choice [Int: choice] that you can either stay, grieving this is what I want, woe is me … or … [ ] deal with it, and get on with it and find something else. (Fieldsend & Smith, 2020, p. 881)
Alienation From the Fertile World and Diminished Sense of Self
The experience of infertility and fertility treatment also results in a sense of not belonging and of being an outsider who is “ It’s like crossing over into another world. In the way you think, in the way that others treat you—absolutely, absolutely, absolutely. Crossing over from a very dark, hidden place, that no one knows about, from a completely different world, into the real world, everyone’s world. Like heaven and earth … So in a way you still have a mark from there. (HaCohen et al., 2018, p. 724)
Women with infertility often find it difficult to be in the company of pregnant women and children, and do not feel understood by those who have not experienced the same difficulties. In response, they isolate themselves from the fertile world and find solace in connecting with other women who share their experience. Their narratives also reflect the stigma and shame associated with infertility, fertility treatment, and non-traditional parenthood: If I had cancer, it would have been open, and we could have talked about it and my community would have supported me. But when it’s infertility, you feel different, isolated, and embarrassed, and ashamed. (Dube et al., 2021, p. 6)
With regards to their partner, women describe how infertility causes relationship strain and alters their sex life. Some women do not feel understood or supported by their partner, and find it challenging to navigate differences with regards to the desire for children, attitude towards treatment, and communication: I don’t really feel like we’re going through it [the medical treatments for infertility]. I’m going through it. I feel like I’m really going through it. I’m the one that’s troubled and he’s not. (Ceballo et al., 2015, p. 8)
Beyond the guilt that women commonly feel, some are blamed by their partner for the couple’s infertility. In extreme cases, women report being emotionally and physically abused by their partner. They also worry about their marital security, particularly in cultures in which men have multiple wives.
Women also describe a lack of understanding and support from family and friends. Many feel envious of family members and friends who are pregnant and who have children. They also feel hurt in response to well-meaning attempts to shield them from potentially painful knowledge or experiences: I think people walk on eggshells around me and it bothers me. I think that affects my life … I don’t need (my parents) to sit me down at dinner and get me all liquored up to tell me that my cousin’s pregnant. I don’t need you to cater to me. (McBain & Reeves, 2019, p. 162)
Due to the pressure they perceive from family and friends to become pregnant, and wishing not to disappoint them, women sometimes keep their fertility treatment or aspects of their treatment secret. In more patriarchal societies, wherein positions of dominance and privilege are held by men, some women endure harsh treatment from their in-laws, who sometimes threaten to undermine their marriage: Your friends will understand, but your mother in-law wants a grandchild. The woman’s side will be ok but the other side … the mother in-law will accuse you and it could destroy the marriage, even though the problem could be with the man. (Fledderjohann, 2012, p. 1388)
The perceived lack of support from healthcare professionals can compound the isolation that seems to be inherent in undergoing fertility treatment. Women report a lack of personalized care, empathy, and concern: I just felt like … two ovaries and a check book. (Bergart, 2000, p. 52)
Some women also believe that they have been misinformed, misled, and given false hope.
In addition to the isolation they experience from others, women often feel disconnected from their previous view of themselves. For many women, their sense of womanhood and femininity, and their sense of self and identity, have been diminished and, in some cases, irreparably damaged: What became very clear to me was that childlessness does not end in having a child. It’s always a part of me. It’s a person, a side of me that has never had kids. My identity as a woman and as a mother has been dented, and that can’t be repaired. (Lehto et al., 2019, p. 450)
For some, their sense of isolation is so profound that they feel abandoned by the world: … that kind of life has not been easy … life has been difficult … in that time comes when even the person who has been comforting you eventually also gives up … there is a time when you see that there is no one on your side and even God has forsaken you when you need Him most … you are without any hope … you feel hopeless. (Asiimwe et al., 2022, p. 6)
In the midst of this isolation, the experience of infertility and fertility treatment also provides an opportunity for self-discovery: First, infertility hit me, then it has sent me in search of my essence. People are growing during and after suffering. ….” (Boz & Okumus, 2017, p. 273)
Women also report that their relationship with their partner has been strengthened by the experience: There have been moments of tension, but the difficulties have made us a team. (Crespo & Bestard, 2016, p. 96)
The Threatened Loss of Meaning and Purpose
For many women, the experience of infertility and involuntary childlessness leads them to question the meaning and purpose of their life: I still feel like, “Where am I? Where am I going? Where am I supposed to be?” If God hasn’t chosen me to be a mother, what is my purpose? That is my biggest question. What am I doing? Why have I been put on earth? … And it makes me angry that I have to search for something. I want to be a mom. Why do I have to find something else to replace that? (McCarthy, 2008, p. 321)
Ultimately, some are able to find meaning in their experience, as well as meaning beyond motherhood: … [Infertility] is an experience that has changed my life. … I don’t mean I dwell on numbers of injections, drugs, feeling of hope and despair that infertility and ART brought, but I feel the experience has helped shape the sort of person I am, how I view life and perhaps what I do in life. (Kirkman, 2001, p. 534)
Discussion
This review aimed to understand the existential concerns of women in fertility treatment and synthesize these concerns in a model based on Yalom’s (1980) existential framework. The qualitative literature supports the view that, for many women, the experience of infertility and fertility treatment triggers an existential crisis, altering their view of themselves and their world. Yalom’s (1980) framework outlines four existential or ultimate concerns—death, freedom, isolation, and meaninglessness. This review supports its adaptation to a model organizing and explaining the experiences of women facing the challenges of infertility and fertility treatment.
Existential Model
Based upon this review, we have developed an Existential Model of Women in Fertility Treatment (see Figure 2). In this model, motherhood provides several ways of temporarily shielding a woman from having to confront each of the four “givens of existence” (Yalom, 1980, p. 8), whereas infertility and fertility treatment force this confrontation. Many of the psychological challenges and threats reported by women in the qualitative literature concerned with the experience of infertility and fertility treatment can arguably be organized and understood in terms of one or more of the four ultimate concerns. At the same time, facing these concerns, and successfully resolving the internal conflict and angst they generate provides an opportunity for growth. In this model, the experience of motherhood in relation to each of the four ultimate concerns is illustrated first, followed by the experience of infertility and fertility treatment in terms of challenges, and then in terms of opportunities for growth. The overlapping nodes illustrate the interconnected nature of the ultimate concerns.
A schematic representation of the Existential Model of Women in Fertility Treatment.
Existential Challenges
Robert Jay Lifton (1973) proposed that humans repress the fear of death through attempting to achieve symbolic immortality by several modes, including the biological mode of living on through one’s offspring. This synthesis suggests that one reason that infertility and fertility treatment often evoke such intense emotion is because they threaten this possibility, forcing a symbolic confrontation with death. Even the word “reproduction” implies that one’s offspring reproduce one’s self. We found that women voiced great concern about the continuity of the self and family lineage, particularly women navigating non-genetic parenthood through egg or embryo donation, adoption, and sperm donation.
Moving from the individual to the collective, the responsibility placed on women with regards to the continuity of human existence manifests in pressure they perceive from others to have children, as well as the negative judgments of others for having few or no children. Indeed, infertility conflicts with “the dominant social and cultural representations of…reproduction as the natural and inevitable life course, particularly for women” (Throsby, 2002, p. 44, cited in Crossley, 2002, p. 78). In highly pronatalist and patriarchal societies, women’s value depends on having children, and it is women who bear the brunt of the consequences of childlessness (Mumtaz et al., 2013; van Balen & Bos, 2004). These gender ideologies and their consequences were also borne out in this review.
The four ultimate concerns, as well as their themes and sub-themes, overlap and are interconnected. For example, while pronatalism and sexism are relevant to the discussion of death and the continuity of life, as discussed above, they are also highly relevant to the other ultimate concerns, including freedom. From Yalom’s (1980) existential perspective, freedom means self-determination. Women’s narratives convey their frustration with the lack of control and the uncertainty imposed by fertility treatment, including the lack of control over their bodies as they fail to become pregnant or miscarry. They describe derailed life plans, and being shocked by their infertility and by treatment failures. Part of the challenge of engaging in fertility treatment involves accepting the limits of medical science while embracing its possibilities. Women’s control over their fertility is important to the feminist agenda, and women setting out to become pregnant are often surprised that, medically, they do not have the same control over becoming pregnant as they have had over preventing conception (Hoffnung, 2007). Some authors argue that assisted reproductive technologies produce an illusion of control and an implicit promise of success (Simon, 2013), and that the dominant representation of the success of IVF is often overstated (Crossley, 2002; Peters et al., 2007). This “‘realness’ problem” (Crossley, 2002, p. 78) is reflected in women’s descriptions of their struggle to control the uncontrollable, maintain hope, and persist with treatment despite repeated treatment failures. In Su and Chen’s (2006) study exploring the lived experience of infertile women who terminated treatment after IVF failure, the primary theme of “transforming hope” included the category “acknowledging the limitations of treatment involving high technology.” Rather than offering ever-expanding options in fertility treatment, Mertes and Pennings (2014) go so far as to defend an “alternative, paternalistic approach,” arguing that sometimes restricting patients’ options will benefit them, despite going against their reproductive autonomy.
Women’s narratives reflect the idea that motherhood is inherent to womanhood. This creates a kind of symbolic prison for both women who are involuntarily childless and those who are childless by choice. In their qualitative study highlighting gender differences in the meaning of infertility and the importance of genetic parenthood, Glover et al. (2009) comment that “[f]rom a societal perspective motherhood is still seen as a vocation for women, with mothers often being idealized and motherhood being seen as the ultimate expression of being a woman” (p. 402). It has been suggested that women “do gender by giving birth” (p. 34) and being unable to do so threatens womanhood (Tsui & Cheng, 2018). In some parts of the world, motherhood is often not a choice but a necessity as women’s worth is often predicated on their ability to conceive (van Balen & Bos, 2004). In highly pronatalist and patriarchal societies, the impact of prescribed gender roles on the experience of infertility is more severe amongst women and gender ideologies operationalize to marginalize women (Mumtaz et al., 2013). As evidenced by the experiences of women in this review, although infertility is a gender-neutral health problem, the dominant construction of infertility maintains it as a woman’s problem (K. Bell, 2013; Venkatesan & Murali, 2018). Furthermore, nurturing and self-sacrifice are often at the center of women’s understandings of motherhood (A. V. Bell, 2020). Women’s narratives seem to equate motherhood with selflessness, which can be understood to challenge freedom and self-determination in this context.
For many women, the ultimate concern of isolation is experienced as “alienation from the fertile world” (Boz & Okumus, 2017, p. 272), which includes alienation from their partners whose experiences are distinct, from family members whom they fear they have disappointed, from friends who have children, from their partner’s family, and from healthcare professionals whom they wish would provide more personalized care.
The ultimate concern of freedom overlaps with isolation when women describe feeling disconnected from their previous view of themselves, which is a kind of intrapersonal isolation (Yalom, 1980). The idea that motherhood is inherent to womanhood limits women’s freedom by dictating a source of identity, and when motherhood is unattainable or unwanted, this idea may damage their sense of self. The literature suggests that women in fertility treatment sometimes derive their sense of self from their losses, understanding themselves as the mothers they might have been, and that underlying their grief is the inability to make sufficient sense of themselves (de Boer et al., 2020).
The impact of infertility and fertility treatment on one’s sense of self involves ideas about “normality,” as women are stigmatized and made to feel not only inadequate but deviant (Venkatesan & Murali, 2018). Women who are unable to conform to normative ideologies of reproduction, wherein reproduction is natural and expected, and mother, father, and child are all genetically related and constitute a family, often struggle with the gap between their experience and their sense of normality, especially in the case of donor-assisted conception (Hammond, 2018). Even after successful non-donor IVF, women and their partners sometimes struggle with an emerging identity as a parent following their experiences of infertility (Allan et al., 2021). In their narratives, women describe being an outsider, and experiencing stigma and shame, often resulting in negative self-comparisons and self-reflections, and an altered identity. Women also describe challenges to establishing their maternal identity, especially in the context of non-genetic motherhood. At the same time, it has been suggested that, despite its non-normative potentials, women use fertility treatment as a vehicle to normality and social acceptance, possibly reinforcing pronatalism, heterosexism, and heterocentric ideas of family (Baker, 2005; Simon, 2013).
In the case of involuntary childlessness, potential barriers to mourning the loss of the fertile self include the dominance of the motherhood narrative and the absence of a collective, normalizing non-mother narrative (Kirkman, 2003). A study of menopause after infertility found that “finally feeling normal” was the core concept expressed (Olshansky, 2005). Similarly, single women who do not conform to normative ideologies of womanhood and who do not meet the “married-with-children” standard also experience challenges to their sense of self, necessitating that they negotiate a “single-without-children” identity (Moore & Radtke, 2015).
Existential crises trigger “big picture” questions about identity, meaning, and purpose. Each of us seek meaning in our lives, and construct meaning through our choices and experiences. As “[c]hildren provide existential meaning, identity, and status…” (Meyers et al., 1995, p. 231, cited in Gerrity, 2001, p. 152), a significant part of the challenge of infertility and fertility treatment for many women is the threatened collapse of a fundamental meaning-providing schema. Women’s narratives indicate how both the threat and realization of childlessness catalyze a process of reflection wherein women contemplate questions concerning the meaning and purpose of their life. For some, a lack of meaningful alternative goals is a potential barrier to mourning the loss of longed-for children (Kirkman, 2003). In some countries, such Ghana, women with infertility are also contending with being seen as possessing little or no “existential value in relation to others,” and as representing an “inferior state of being” and “a life of incompleteness” (Gatti & Ossom-Batsa, 2018). As one woman asked, “… If God hasn’t chosen me to be a mother, what is my purpose? That is my biggest question …” (McCarthy, 2008, p. 321).
Opportunities for Growth
While the women’s narratives focus mostly on existential challenges, they suggest that the crisis of infertility also provides an opportunity for growth. This is consistent with proponents of existential psychotherapy, such as Spira (1997) who points out that, while crisis threatens the stability of our images of ourselves and our world, suspending these fixed images permits reflection, self-discovery, authenticity, and, ultimately, greater freedom.
Reflections on both identity and worldview are natural as one makes meaning of the infertility experience (Cousineau et al., 2006). Mälkki (2012) highlights the role of reflection in negotiating involuntary childlessness, where it appears to enable meaning-making. In one of few studies included in this review focusing on “gains through loss” after unsuccessful IVF treatment, Chinese women report personal gain in terms of inner strength, knowledge, and humility; interpersonal gain regarding their marital relationship and relationships with others; and transpersonal gain in the form of spiritual growth and a change in identity (Lee et al., 2009).
Women’s narratives suggest that the experience of infertility provides an opportunity to create a different kind of legacy not based on having children (McCarthy, 2008), and might enhance one’s appreciation for life. Their narratives also suggest that it may lead to greater acceptance of the uncertainty of life; personal growth in the form of humility, strength, and persistence; and greater freedom in terms of pursuing other life goals.
The intimate connection between freedom and isolation is again evident here. By meeting social and cultural norms, one may avoid isolation through a sense of belonging, but at the cost of one’s freedom to explore and discover one’s self. Conversely, by failing to meet social and cultural norms, one may experience isolation but have greater freedom to exercise self-determination. Resolution of this tension is exemplified by the woman who, after unsuccessful treatment, said that she “found freedom” in her awareness that she “isn’t ever going to be like everybody else …,” and that this freedom allowed her to think about doing “whatever I want” (McCarthy, 2008, pp. 321–322). While the experience of infertility and fertility treatment often results in a sense of alienation from the fertile world, from others, and even from the self, women’s narratives suggest that it may also strengthen one’s relationship with their partner, as well as lead to self-discovery. As one woman put it, “First, infertility hit me, then it has sent me in search of my essence. …” (Boz & Okumus, 2017, p. 273).
Lastly, women’s narratives reveal their search for meaning and purpose in the experience of infertility and fertility treatment, as well as beyond genetic motherhood and motherly devotion. In their model of stress and coping, Folkman and Greer (2000) illustrate how individuals experiencing profound distress in the face of serious illness will engage in meaning-based coping, wherein they try to find meaning in the challenge. One of the ways women with infertility find meaning and hope in their suffering is through their religious and spiritual beliefs (Roudsari et al., 2007), as evidenced by the experiences of women in this review. In their Three Tasks Model of Adjustment to Unmet Parenthood Goals, Gameiro and Finnigan (2017) describe how meaning-making, along with acceptance and the pursuit of new life goals, mediates psychosocial adjustment following unsuccessful treatment. There is a changing process of meaning-making over time as women transition to biological childlessness and reconstruct their lives after treatment fails (Daniluk, 2001). In the included studies, women and their partners demonstrate resilience in redirecting their energies into areas of their lives where they can achieve positive outcomes (Peters et al., 2011), and many cope with childlessness by caring for others, such as the children of friends or relatives, elderly parents, or pets (Wirtberg et al., 2007).
Limitations of the Literature
The literature reviewed has several limitations. The 144 studies reviewed included women from 34 countries spanning six continents. While these women represent different societies, cultures, and experiences, these studies reflect the embeddedness of heterosexism and heterosexual conceptions of family across the world. Conceptions of family are so deeply rooted in heterosexism that, in the included studies, demographic characteristics such as gender identity, sexual orientation, and relationship status were often not directly reported and, presumably, not asked. Instead, these studies reflect a persistent, normative ideology of family and family formation, wherein participants were presumed to be cisgender, heterosexual, and either married or coupled.
Since assisted reproductive technology enables, not only heterosexual parenthood for infertile couples, but also single parenthood, and same-sex parenthood, it is helping to change the cultural meaning of family (Samish, 2006). Still, some question whether reproductive technology does anything to change how society views people who represent atypical narratives of reproduction, such as single mothers and others who challenge heterosexual family norms (Luna, 2018). While acknowledging its potential to expand conceptions of family, some go so far as to question whether reproductive technology actually “reproduces” constricting social practices by reinforcing the notion that motherhood is the idealization of femininity (Simon, 2013).
The experience of fertility treatment for single women, lesbian women, and same-sex couples tends to be studied separately. Being single and without children challenges the heterosexual standard of “married-with-family” in general, necessitating that single women answer to normative ideologies and negotiate a space where being single is understood as normal (Moore & Radtke, 2015). Lesbian and same-sex parenthood continue to be seen as “non-normative” and “unconventional,” particularly in heterosexist societies and cultures where homosexuality remains highly stigmatized (Lo & Chan, 2015). In Greece, for example, lesbian women are not permitted access to IVF while single women are for medical reasons (Voultsos et al., 2019). The impaired social acceptance of lesbian parenthood (Voultsos et al., 2019), and the inequalities in service provision between heterosexual and lesbian women (Chapman et al., 2012) continue to prove challenging for lesbian women who are trying to construct a new narrative of a bio-social family (Ehrensaft, 2008).
The experience of fertility treatment for transgender women also tends to be studied separately. Transgender and gender non-conforming people are seeking to create families in increasing numbers (Dickey et al., 2016), and developments in uterus transplantation might, one day, put assisted gestation within reach for transgender women (Murphy, 2015). Still, transgender and non-binary people report not fitting into the cisgender system of accessing fertility treatment, as well as adoption and fostering services (Tasker & Gato, 2020).
Our Existential Model of Women in Fertility Treatment incorporates the dialectical dimensions of challenge and opportunity associated with each existential concern. While women’s narratives highlight the opportunity for personal growth afforded by the experience of infertility and fertility treatment, the included studies focus almost exclusively on the negative aspects of the experience, with only a small number of exceptions. Lee et al.’s (2009) study was the only one to focus specifically on the gains perceived by both women and men after unsuccessful IVF treatment. Two studies focused on resilience: one on developing a grounded theory of resilience among women undergoing fertility treatment (Bailey et al., 2017) and another on fostering resilience in childless couples (Peters et al., 2011). Transforming hope was the focus of another study concerning women who terminated treatment after IVF failure (Su & Chen, 2006).
Limitations of the Review
This review also has several limitations. Existentialism, which prevailed during the post-WWII period, and existential psychotherapy, which followed, were primarily philosophized over by white, educated men (Silverio, 2019). One might, therefore, debate the appropriateness of using an existential framework to organize, synthesize, and understand the concerns of women in fertility treatment. However, the prominent existentialist thinker, Simone de Beauvoir, became one of the most influential figures of post-war feminism (Silverio, 2019), lending credence to existentialism’s applicability to the experiences of women. Furthermore, existential group psychotherapy has largely been used for breast cancer (Kissane et al., 1997, 2003; Spiegel & Spira, 1991), supporting its applicability to women’s health and mental health issues, which could be extended to include infertility and fertility treatment. The question of whether ideas developed by white scholars are useful to the diverse general population remains. More specifically, the question remains as to whether the suggested “universal” concerns of death, freedom, isolation, and meaninglessness are, in fact, universal.
Methodologically, studies focusing on infertility and fertility treatment in the context of trans parenthood were excluded. This is a potential limitation since, as de Castro-Peraza et al. (2019) concluded after reviewing the literature on trans parenthood, “it is not a male or female desire to want to have a child—it is a human desire” (p. 12). Only articles written in English were included and reviewed, potentially excluding different perspectives that might be held by women from non-English speaking countries. While reliability of whether to include or exclude studies was established between two of the authors, only one member of the research team reviewed the included studies, albeit in consultation with other members.
Summary, Conclusion, and Recommendations
In summary, we conducted a best fit framework synthesis to understand women’s experience of infertility and fertility treatment from an existential perspective. Yalom’s (1980) existential framework, which deals with four ultimate concerns of human existence—death, freedom, isolation, and meaninglessness—provided a relevant pre-existing or a priori framework, and was used to generate a priori themes adapted to the infertility and fertility treatment population. The first-hand accounts of women from the qualitative literature concerning the lived experience of infertility and fertility treatment were analyzed and synthesized according to these a priori themes. A combination of coding against these a priori themes, and the generation of and assignment of quotations to new themes, produced an Existential Model of Women in Fertility Treatment. In this Existential Model, the ultimate concerns of death, freedom, isolation, and meaninglessness translate to the following: loss and grief, and the threatened loss of symbolic immortality; the powerlessness to direct one’s life; alienation from the fertile world and diminished sense of self; and the threatened loss of meaning and purpose.
This review of the existential concerns of women with infertility and women in fertility treatment, which has generated an Existential Model of Women in Fertility Treatment, is an important addition to the literature in this area. This model not only captures but also elucidates the psychological challenges that many women in fertility treatment face, identifying experiences that might explain the psychological distress, anxiety, and depression often associated with fertility treatment. Additionally, this model describes the opportunities for growth afforded by the fertility treatment experience.
Recommendations for Research
This review and our Existential Model of Women in Fertility Treatment suggest that women with infertility and women in fertility treatment experience many psychological challenges that are existential in nature. As some women alluded to and as our model illustrates, these challenges also create opportunities for growth. Further research is needed to explore the potentially positive aspects of the experience of infertility and fertility treatment. Additionally, further research is needed to test the validity or trustworthiness of our current Existential Model, including research aimed at developing and testing existentially oriented psychological interventions for women in fertility treatment. Further research which includes not only heterosexual women who are part of a couple, but also lesbian, single, and transgender women is also needed to test the validity or trustworthiness of this model when applied more inclusively. While this review focused solely on the experiences of women, it would be valuable to explore the existential concerns of men with infertility and men in fertility treatment, and whether our current Existential Model is useful when applied to men. Future research might examine the relationships between psychological symptoms, such as anxiety and depression, and existential concerns. Future research might also explore differences with regards to existential concerns between women with infertility who are not receiving treatment, those in fertility treatment, and those who have unsuccessfully finished treatment. Given that an existential framework has proven useful in terms of better understanding the psychological challenges of women in fertility treatment and given that novel psychological interventions are needed to better support these women, future research is also needed to test the feasibility of implementing existentially oriented psychological interventions for this population.
Recommendations for Treatment
The effectiveness of existing psychological interventions, primarily cognitive behavioral therapy, and educational interventions for the infertility population is unproven (Verkuijlen et al., 2016). While our Existential Model of Women in Fertility Treatment highlights the existential nature of the crisis of infertility, and while existentially oriented interventions have been implemented for other populations, such an intervention has yet to be implemented for this population. Our Existential Model, along with the themes and sub-themes identified in this review, might inform the adaptation of an existentially oriented psychological intervention for women with infertility and those in fertility treatment. Fertility specialists and fertility clinic staff need to be aware of the potential negative impact of fertility treatment on the mental health and well-being of their patients, and suggest and offer resources. Fertility clinics might also consider adapting already existing resources to address some of the challenges outlined in our Existential Model.
Supplemental Material
sj-docx-1-sgo-10.1177_21582440251372769 – Supplemental material for A Qualitative Evidence Synthesis of Women’s Experience of Infertility and Fertility Treatment From an Existential Perspective
Supplemental material, sj-docx-1-sgo-10.1177_21582440251372769 for A Qualitative Evidence Synthesis of Women’s Experience of Infertility and Fertility Treatment From an Existential Perspective by Andria Aiello, Mary Jane Esplen, Heather Boon, Rhonda Zwingerman, Brenda Toner and Robert G. Maunder in SAGE Open
Supplemental Material
sj-docx-2-sgo-10.1177_21582440251372769 – Supplemental material for A Qualitative Evidence Synthesis of Women’s Experience of Infertility and Fertility Treatment From an Existential Perspective
Supplemental material, sj-docx-2-sgo-10.1177_21582440251372769 for A Qualitative Evidence Synthesis of Women’s Experience of Infertility and Fertility Treatment From an Existential Perspective by Andria Aiello, Mary Jane Esplen, Heather Boon, Rhonda Zwingerman, Brenda Toner and Robert G. Maunder in SAGE Open
Footnotes
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Ethical Considerations
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Declaration of Conflicting Interests
Data Availability Statement
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References
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