The problem with disclosing IVF status: Normative parental timelines and the gendered support needs of involuntary childless heterosexual couples undergoing in vitro fertilisation

Social construction of infertility across cultures

Infertility is characterised by the absence and desire for a child. The way individuals make sense of infertility varies cross-culturally due to the socially constructed nature of parenthood and what infertility means for that culture (Greil et al., 2010). Greil et al. (2010) argued that in the Global North women’s voluntary childlessness is socially acceptable, as they can pursue other goals such as education and careers. Within stronger patriarchal systems (e.g. sub-Saharan Africa, South Asia, Middle East), women’s main fulfilment revolves around motherhood (Inhorn, 2003a). Childbearing in these societies is seen as mandatory (Inhorn, 2003b; Van Balen, 2008). In some countries the rules around marriage mean that men can divorce a woman if she does not bear a child. A childless woman occupies the lowest societal level, often ostracised and isolated by their community, abused by her husband and his family (Inhorn and Patrizio, 2015; Van Balen, 2008; Van Balen and Bos, 2009). Divorced childless women are frequently left living in poverty (Van Balen and Bos, 2009).

In some cultures (e.g. some poor areas of the Indian subcontinent and Sub-Saharan Africa), male infertility is still not recognised meaning that women take the blame (Inhorn, 2003a; Van Balen and Bos, 2009). When male infertility is acknowledged, the condition is viewed as highly stigmatising. Thus, infertile men often refuse infertility tests and allocate the blame to the woman (Inhorn, 2003b). So, while infertility in the Global North impacts mostly individuals, sufferers in low resource countries are impacted at individual, community, social, religious and economic levels (Van Balen, 2008; Van Balen and Bos, 2009).

The above review highlights both the socially constructed nature of infertility and the impact of this upon marital relationships, raising the importance of studying heterosexual couples (Greil et al., 2010). To situate our UK study, we next review research about routes to parenthood in the Global North.

Route to parenthood

Research investigating reasons and decisions for becoming a mother highlight a socially acceptable order in achieving motherhood. Steps to motherhood involve securing an education, travel, career and property ownership (Budds et al., 2016; Perrier, 2013; Sevón, 2005). Social expectations regarding financial security, career progression, a stable romantic relationship and emotional maturity all need to be balanced against women’s optimal biological time for pregnancy (Budds et al., 2016; Cooke et al., 2012; Locke and Budds, 2013) resulting in a very limited window for women to become mothers.

In terms of heterosexual fatherhood, female partners play a critical role in male decision-making processes (Deslauriers, 2011; Marsiglio et al., 2000; Von Der Lippe and Fuhrer, 2004). The socially expected order for fatherhood are career, marriage, children (Hadley and Hanley, 2011). As male fertility was not seen as impacted by age, it did not result in feelings of responsibility and guilt for leaving it too late (Hadley and Hanley, 2011; Sylvest et al., 2014).

People are socialised into their reproductive story and their vision of themselves as parents long before their pregnancy and parenthood (Jaffe, 2017; Jaffe and Diamond, 2011). Infertility acts as a biographical disturbance to this life story posing the question of how heterosexual couples in fertility treatment (re)construct their reproductive story regarding parenthood.

Gender identities and infertility

The desire to have children is socially constructed as a female biological instinct and measurement of femininity; equating womanhood with motherhood (Gillespie, 2000; Ulrich and Weatherall, 2000). Similarly, fatherhood is viewed as confirmation of masculinity; evidencing fertility and virility (Berg et al., 1991). Infertility challenges traditional masculinity (Thomas, 2018; Throsby, 2004), triggering feelings of shame and emasculation (Gannon et al., 2004; Webb and Daniluk, 1999). Thus, infertility and involuntary childlessness can lead to social stigma for both women and men (Fernandes et al., 2006) and secrecy (Kirkman, 2003.; Gannon et al., 2004; Hanna and Gough, 2020; Malik and Coulson, 2008).

Social support within treatment

Social support is key to the wellbeing of couples undergoing fertility treatment, decreasing the likelihood of terminating the treatment (Vassard et al., 2012). A lack of perceived social support from close family was associated with treatment stress (Martins et al., 2014), anxiety, depression and health complaints (Lechner et al., 2007). Disclosure of infertility could cause unsupportive responses such as embarrassment, awkward reactions, inappropriate jokes and a general lack of empathy (Ussher and Perz, 2018). The expression of pity, problem solving advice and general insensitivity hindered a supportive relationship and led to a lack of disclosure (Abraham, 2019). In this paper the term non-disclosure denotes times when couples chose not to share information with family and friends about their difficulties conceiving and infertility treatment.

Gender roles within treatment

Regardless of causal factors, most medical infertility procedures target women’s bodies, with medics viewing women as their primary patient (Hanna and Gough, 2020; Throsby, 2004) Thus, the male partner often feels marginalised and takes on a supportive role (Culley et al., 2013; Hanna and Gough, 2020; Malik and Coulson, 2008). However, women reported their spousal support as the most crucial during fertility treatment (Abraham, 2019; Jafarzadeh-Kenarsari et al., 2015). Spousal communication difficulties regarding treatment could lead to the termination of the treatment (Abraham, 2019; Vassard et al., 2012).

Throsby and Gill (2004) outlined four roles of the male partner within infertility treatment: providing a sperm sample; support administrating injections; veto rights over the decision to terminate treatment; and providing emotional support. However, men experienced difficulties discussing treatment, supressed their own treatment related stress and emotions, and were consequently unable to support their partner, which ultimately made their partner feel isolated and lonely (Malik and Coulson, 2008; Throsby, 2004; Throsby and Gill, 2004). Throsby (2004) and Throsby and Gill (2004) linked men’s reluctance to talk to traditional masculinities where men do things rather than talk about them. Research on male infertility online support forums (Hanna and Gough, 2016, 2017; Malik and Coulson, 2008) partially confirmed these findings. Men on the forums viewed emotional support of their woman as their main role, however some of them felt hopeless when dealing with her emotions regarding infertility (Hanna and Gough, 2017), or if she pushed them away (Malik and Coulson, 2008). However, Sauvé et al. (2020) found that some couples developed an increased closeness from undergoing infertility treatment.

The current study

This study employs a social constructionist epistemology to explore how heterosexual couples in the UK manage disclosing their infertility status and how this links to support seeking during fertility treatment. Stigma associated with infertility is gendered but not enough is known about how heterosexual couples negotiate disclosure to receive the support that they need. Additionally, the supportive role is problematic for men and needs further investigation.

Design

Dyadic semi-structured interviews were conducted with heterosexual couples after they finished their first treatment cycle of in vitro fertilisation (IVF; where eggs are retrieved and fertilised by sperm in a lab), or in vitro fertilisations with intracytoplasmic sperm injections (IVF/ICSI where in addition to IVF, sperm is injected directly into the egg). Since IVF is often seen as the last option within the line of existing fertility treatments, the threat of involuntary childlessness and consequent change to reproductive plans of these couples was very real. Reflexive Thematic Analysis with a social constructionist epistemology was employed to investigate co-produced accounts of fertility treatment.

Sampling and data collection

Opportunity sampling was employed. Participants were recruited in waiting rooms at a UK/Midlands, England assisted conception unit and via their Facebook page. Only heterosexual couples who were childless before commencement of their treatment, with any type of infertility, and who were using their own eggs and sperm were included. Ten heterosexual couples (n = 20) were recruited. Seven couples were NHS funded and three couples were self-funded. This was the first treatment cycle of IVF or IVF/ICSI for all but two couples. Most couples had previously experienced some form of less invasive fertility treatments. The longest duration for trying to conceive was 8 years.

Timeline of treatment and interviews

Eight couples were recruited when they attended their first clinic appointment. Couples proceeded with their treatment cycle up to embryo transfer, followed by 2 weeks wait, after which they took a pregnancy test. Interviews took place soon after they knew the results of their pregnancy test. Five couples were pregnant, three couples were not.

To achieve a larger sample, two couples were recruited via Facebook and interviewed retrospectively but within 2 years of their initial treatment, which had been successful. The study was part of a multi-study project. The duration of one treatment cycle varied between 6 and 8 weeks (from first hormonal injection to pregnancy test). The data collection took approximately 6 months.

Participants were aged 25–45 years., Eight couples were interviewed face-to-face, two couples were interviewed via Skype. Interviews ranged from 43 minutes to 2 hours and 35 minutes duration, totalling 821 minutes (approximately 14 hours).

The study involved two versions of an interview schedule depending on successful/unsuccessful treatment outcome. The schedule was informed by existing research and input from a patient participation group. The schedule was divided into eight sections: trying for a baby; pre-treatment and diagnosis; first consultation; treatment and its impact on everyday life; 2-week wait; results; review consultation; impact of the treatment. Interviews were audio-recorded.

The study was ethically approved by both the National Health Service Research Ethics Committee (NHS REC) and the host institution ethics committee. Informed consent was obtained prior to interview and couples were informed about their right to withdraw. Participants were monitored during the interview for any signs of distress and offered breaks if needed.

Analytical position and procedure

Reflexive Thematic Analysis (TA; Braun and Clarke, 2006, 2022) was used to identify patterns of meaning within the data. The first author was an infertility sufferer and therefore took an insider stance. However, the second author was voluntarily childless and also coded the data, thus was able to member check to insure validity. We applied a social constructionist epistemology, which fits well with the notion that infertility is socially constructed. Social constructionism views knowledge as culturally and historically specific and created within social interaction (Burr, 2015) and permits examination of accepted assumptions about phenomena.

Interview recordings were transcribed and anonymised. The analysis followed the six-steps outlined by Braun and Clarke (2006, 2022). The first two authors immersed themselves in the data, listening to the recordings and re-read the transcripts. Next, the data was coded at the semantic then latent level. These codes were collated to generate themes. The meaning behind each theme was refined to address the research aim. Extracts demonstrating the core concept of each theme were identified to write the analytical section. To apply the social constructionist lens with its emphasis on discourse, we also paid attention to social actions (e.g. justifying decisions) and considered how people were positioned in the data. Finally, we investigated deviant cases – these are exceptions and irregularities within the identified thematic patterns and are useful in checking the validity of interpretations when that pattern is absent (Wiggins, 2017).

‘The next step’: Omnipresence of normative parental timelines

For our participants, infertility disrupted the ‘normal/socially accepted’ life trajectory. Seven out of 10 couples (14 out of 20 participants) referenced this, usually when asked about how they decided to have a baby. A chronological order was oriented to across couples’ responses which referenced key stages such as marriage, job/financial security, home ownership and trying for a baby (Budds et al., 2016; Perrier, 2013; Sevón, 2005). The order was not strict, but elements of these stages were omnipresent across the data.

Balancing the need for social support with problems associated with disclosure

All participants constructed disclosure of trying for a baby, their infertility and fertility treatment as problematic due to the pressure from loved ones to follow the normative timeline. Consequently, conflicts arose regarding social support provided during fertility treatment.

The first extract demonstrates the initial non-disclosure of attempts at natural conception.

Men’s supportive role

Our data highlighted specific gendered dynamics of support between the partners. As noted earlier, within fertility treatment men take on a supportive role (Hanna and Gough, 2016; Throsby, 2004). However, the dynamics of these roles are unclear.

Fourteen out of 20 of our participants presented the male role as supportive during the treatment in terms of emotional and practical support. Two couples mentioned the man’s financial responsibility for the treatment cost, both women however expressed sadness from the lack of their male partner’s emotional support during the treatment. One couple portrayed the man’s support with injecting as physically harmful. Men were usually constructed as being positive about the possible result whereas women constructed being more cautious.

Conclusion

This study examined how heterosexual couples in the UK managed disclosing their infertility status and sought support seeking during their fertility treatment. In our first theme, the decision to have a child was presented as following a socially normative order and was constructed as the natural next step. This is consistent with other research on infertility (Johansson et al., 2011; Webb and Daniluk, 1999), motherhood (e.g. Budds et al., 2016), and fatherhood (Hadley and Hanley, 2011). Analysis of our deviant case further supported this – despite infertility disrupting this timeline, the normative route was still present within their reproductive story (Jaffe, 2017; Jaffe and Diamond, 2011; Ussher and Perz, 2018). Infertility, and its treatment, were presented as a diversion and incorporated into the anticipated story of parenthood.

A novel contribution is how family and friends socially constructed conception as something natural and easy, placing our participants visibly outside the social norm. Participants demarcated themselves from couples who conceived naturally and this ‘otherness’ could lead to stigma (Goffman, 2009) and potentially increased the couple’s need for non-disclosure.

In our second theme, two stages of infertility disclosure – initial failed attempts at natural conception, and later their infertility and accompanied treatment – were constructed as problematic. The normative route to pregnancy in heterosexual couples (Budds et al., 2016; Johansson et al., 2011; Webb and Daniluk, 1999) and the reproductive story (Jaffe, 2017; Jaffe and Diamond, 2011; Ussher and Perz, 2018) were portrayed by our participants as socially visible, and delays in their timeline lead to questioning, pressure and possible stigma. This resembles research on older motherhood (Budds et al., 2013; Shaw and Giles, 2009), where older mothers were portrayed in the media as abnormal and defective for failing to produce a child within the expected age limits. However, the concept of appropriate stage within a heterosexual relationship to have a baby, in contrast to maternal age, was the signal when to have a baby.

Rather than falling victim to the stigma of infertility (Abraham, 2019) and public dispersal of their inability to conceive (Ussher and Perz, 2018), our participants constructed avoiding widespread disclosure to prevent any future discussions and social pressure. However, this strategy meant that this could act as a barrier to later disclosure of infertility and treatment.

A second stage of disclosure of infertility and treatment was constructed as additionally hindered by having to deal with undesirable emotional responses of others if the treatment cycle failed, and to prevent this news being shared, which is consistent with existing literature (Abraham, 2019; Ussher and Perz, 2018). However, our research supplements extant literature by highlighting how non-disclosure was constructed as problematic even when the couples became pregnant. This was justified by the social conventions regarding early pregnancy, where pregnancy is usually announced post-12 weeks viability scan. This implies that disclosures of early pregnancy and pregnancy failure (natural or post-treatment) are seen as socially undesirable, and consequently poses another barrier in disclosure of fertility treatment and provision of social support.

Our final theme demonstrated how men in our study were constructed as taking on a supportive role, which is consistent with existing research (e.g. Malik and Coulson, 2008; Throsby, 2004; Throsby and Gill, 2004). Most men in our study supported their woman emotionally, and/or during the injections of hormones, which partially reflects the roles outlined by Throsby and Gill (2004). Whilst we cannot generalise from a small sample, our findings contradict previous research (e.g. Hanna and Gough, 2016; Throsby, 2004; Throsby and Gill, 2004) by proposing that men found emotional support difficult due to the traditional masculinity of un-emotional man. Our data suggested a pattern in the provision of support:

We suggest that this pattern draws on a traditional chivalrous masculinity (Girouard, 1981) of a loyal, brave (and proactive) man who protects his woman. However, for this pattern to be effective, the woman needed to portray herself as struggling and in need of support. This emphasises the initial role of a woman in creating a legitimate space for the man during the treatment to support them. It can also help explain research findings on male online infertility forums, where men claimed difficulty dealing with their partner’s emotions when she pushed them away (Malik and Coulson, 2008) and consequently did not create space or need for male support. This could be something that clinicians raise with their patients. This theme also adds to limited literature on marital benefits of undergoing infertility treatment in relation to the development of good communication and supportive behaviour that both partners saw as beneficial (Sauvé et al., 2020).

We also found additional dichotomy of roles that were constructed – women were positioned as cautious and worried during treatment process, while the men were positive about specific treatment stages. This is consistent with studies on male online support groups (Hanna and Gough, 2017; Malik and Coulson, 2008). However, our study demonstrated this from the perspective of both partners (rather than men only), where the men acted as a comforting force for the women.

Implications, limitations and future research

Our study has implications for infertility professionals and counsellors, for patients and the wider population. We found that barriers to disclosure of treatment and accompanied social support start early on with first failed attempts for natural conception. This initial non-disclosure prevents the couples from accessing social support later during the treatment when they most need it. We argue that infertility clinicians could alert patients early on to the likelihood of prolonged exposure to social pressure surrounding conception. Strategies on how to deal with the pressure and on how to safely disclose and negotiate social support would be beneficial. Change of societal norms around discussions of failed attempts in conception and early pregnancy via more education would be valuable.

Another unique finding is the important role of the woman in openly expressing their struggles and need for help, thus affording space for a male protective role within the treatment. Awareness of these dynamics could encourage couples to allocate valid places for the male supportive role during the treatment within the framework of traditional masculinity and femininity and ultimately improve the wellbeing of couples during the treatment. However, we are aware that our findings and interpretations are based on a small sample size inviting further investigations into the dynamics of support within heterosexual couples undergoing infertility treatment.

Our study investigated a seldomly heard participant population. We interviewed patients in a very sensitive stage of their IVF or IVF/ICSI treatments and lives where all but two of them were interviewed shortly after their treatment cycle and pregnancy test. We are aware that inclusion of the historic interviews could allow for different couples’ dynamics during interviews. However, this still allowed us to investigate negotiations of social support, treatment disclosure and the dynamics of gender roles during the treatment. Participants were recruited at the start of their IVF or IVF/ICSI treatment when we could not predict their treatment results. At the time of interview, most couples were in very early stages of pregnancy, but three of our couples were not pregnant. Due to difficulties in reaching the target population, the type of infertility (male, female, mixed, unexplained) was not accounted for in the current study. Thus, future research could investigate participant groups according to different types and causes of infertility thus adding clarity on if and how the cause of infertility influences identified gender roles and communication during treatment. Additionally, division according to treatment results could also yield further findings. Our study confirmed the male supportive role within the treatment. However, future research could investigate how men deal with their own worries and their own support. Our study provided more insight into the dynamics of disclosure and social support during fertility treatment and into roles within heterosexual dyads during fertility treatment.