Sample characteristics
Twenty individuals expressed interest (18 postnatally, 2 antenatally) and received study information; five did not initiate further contact, and one participant did not deliver before the end of data collection (02–12/2021). Purposive recruitment occurred to ensure representation of the varying reasons individuals seek IVF treatment.
In total, 12 participants (11 cisgender women, 1 gender-nonbinary) were interviewed. The mean age was 37.5 years (range 31–43 years). Eleven were married (n = 10) or cohabiting (n = 1) and one was a solo parent. All held a university degree and identified as White British. Participants’ IVF indications included fertility challenges (n = 9), being in a female + non-binary couple (n = 2) or a solo parent (n = 1); none had a prior living child. Participants had undergone 1–12 prior IVF treatment cycles before successful conception and had pregnancy loss experiences including single (n = 1) or recurrent miscarriage (n = 4) and stillbirth (n = 1). All participants underwent UK IVF treatment between 2018 to 2020. Table 1 outlines participants’ relevant characteristics. Interviews took place remotely via video conferencing software (n = 10) or telephone (n = 2), based on participant access/preference. Interviews ranged 61–148 (mean 94) minutes.
Table 1
Overview of some participant characteristics
| Pseudonym | Gender | Reason for seeking IVF | Year of IVF treatment | Prior IVF treatment cycles | Pregnancy Loss |
| Dee | Cisgender woman | Fertility challenges | 2018 | > 6 | Recurrent miscarriage |
| Miriam | Cisgender woman | Fertility challenges | 2020 | 2 | Recurrent miscarriage |
| Jane | Cisgender woman | Fertility challenges | Not reported | > 6 | No |
| Ever-hopeful | Cisgender woman | Fertility challenges | 2018 | 3 | Single miscarriage |
| Elle | Cisgender woman | Fertility challenges | 2020 | 0 | No |
| Gemma | Cisgender woman | Fertility challenges | 2019 | 0 | No |
| Abigail | Cisgender woman | Fertility challenges | 2019 | 4 | Stillbirth |
| Louise | Cisgender woman | Fertility challenges | 2018 | 5 | Recurrent miscarriage |
| Tel | Gender-nonbinary | Same-sex couple | 2019 | 0 | No |
| Kate | Cisgender woman | Solo parent | 2019 | 0 | No |
| Frankie | Cisgender woman | Fertility challenges | 2020 | 0 | Recurrent miscarriage |
| Sophie | Cisgender woman | Same-sex couple | 2020 | 3 | Chemical pregnancy; not considered a loss by the participant |
| Note: To protect participant identity, IVF treatment cycles over 6 were truncated. |
Findings
Three superordinate themes and nine sub-ordinate themes were identified (see Fig. 2).
Superordinate theme 1 - The lasting imprint of IVF: unidentified and unmet psychological needs
The physical and emotional impact of the IVF process penetrated multiple aspects of participants’ lives, leaving unidentified and unmet needs. For many, IVF was a repeated, cumulative loss which impacted future experiences. This theme demonstrates IVF’s enduring impact from before conception through to parenting, encompassing four subordinate themes across this journey.
Subordinate theme 1.1- The hidden truths of IVF: powerless in the process
Participants reflected on the uncertain and helpless position they found themselves in when they entered the IVF process. Louise described being at the “mercy” of IVF. The process was described as “traumatic” (Dee, Tel), “stressful” (Abigail, Jane, Dee, Louise, Kate, Frankie), “all-consuming” (Elle, Jane, Ever-Hopeful, Louise). IVF’s medical, intrusive and invasive nature was associated with lacking bodily autonomy and control. For Kate, a solo parent, lacking participation in the process created doubt and anxiety that her baby was genetically related to her:
“Not only do you not totally know that it’s his sperm, but you didn’t actually know it’s my egg… you just have that slight horror of what if there’s a mix up at the clinic….But, genuinely to start with, it did feel quite anxiety inducing that you didn’t know that she was…maybe that did affect why I didn’t have the rush of bonding immediately because I just didn’t know she was…”.
Participants reported the treatment-associated obligations associated and highly controlled medical environment’s impact. The “cold” (Tel), “clinical” (Gemma, Tel, Kate) nature of IVF contrasted to participants’ preconceived ideas, hopes and fantasies regarding conception. For some, like Tel, a gender-nonbinary individual in relationship with a ciswoman, the IVF process impacted bonding in pregnancy and parenting:
“It was constantly this ‘go to the hospital, get checked’. It sort of removed the nurture from it, for me. It was all just so clinical and umm, cold…it certainly changed my outlook on my pregnancy because you spend so much time in the hospital it removed some of that bond for me”.
The IVF process was emotionally turbulent for participants, marked by anxiety, hope, excitement, sadness and disappointment. The emotional “rollercoaster” (Gemma) left participants vulnerable, anxious, distressed and depleted of resilience before embarking on pregnancy. On successful conception, participants often made lifestyle changes to exert and reclaim control, as described by Ever-Hopeful:
“I went for walks, ate all the right food. Got the right sleep, had a nap if I needed to. I mean, it was so religious…And for me, being in control of that was…I was doing everything that I possibly could, so if it did go wrong, I knew I had done everything I could and I couldn’t blame myself because I had done everything by the book, to the letter and far beyond that as well”.
Subordinate theme 1.2- Decisions and control: empowerment through birth and feeding
The conception mode impacted birth preferences and feeding choices. There was a desire to avoid clinical environments and a yearning for birth without medicalised intervention. Ever-Hopeful, who conceived using donor eggs, described her distress at requiring a caesarean birth:
“I couldn’t do the rest of it normally, I wanted to have a normal birth… and now I’ve got to have a caesarean as well… You think, that hasn’t happened normally, I want something else to”.
Contrastingly, Jane, who similarly conceived via donor eggs, found it difficult to contemplate vaginal delivery due to concerns regarding the risks. Baby’s health and safety were often prioritised over participants’ own wishes and preferences. A planned caesarean brought “control” (Dee), certainty and containment, which was “taken away during the IVF process” (Dee).
The decision whether to breastfeed was often made before baby’s arrival, and frequently embedded within family and cultural experiences. However, breastfeeding appeared to hold significant meaning for many participants. There was a strong desire to provide the “best” start (Miriam, Elle, Tel, Kate, Sophie) and for some their conception mode fuelled desires to feed their child “normally” (Ever-Hopeful, Elle). Miriam and Ever-Hopeful persevered with breastfeeding despite gruelling feeding regimes and physical pain. Breastfeeding difficulties led to perceived failure and premature cessation was associated with “guilt” and feeling “replaceable” (Elle). When breastfeeding successfully established, participants reflected on the positive effects for both infant, parent and bonding. Extended breastfeeding was discussed, surpassing participants’ expectations. For those who sought IVF for fertility challenges, initiating breastfeeding led to feeling successful and, as Louise reported, a sense “that your body’s doing something right for once”.
Subordinate theme 1.3- Unseen and silenced
Participants contrasted in willingness to share and communicate their IVF journey with others. Stigmatisation and lacking awareness surrounding MAC often meant participants concealed their IVF journey. For some, this was linked to not wanting to “disappoint” (Ever-Hopeful, Abigail) or feel “pity” (Abigail), meaning participants and their partners frequently managed alone. Contrastingly, others like Elle were open and eager to share their IVF experience, feeling proud their child was created with “love and science”.
For all participants, there was a sense that their conception mode added to feeling “different” at varying points through their antenatal or postnatal journey. Loneliness, isolation and difficulties navigating existing relationships were noted; participants often did not vocalise concerns to health professionals or their own support systems. The journey to conception also led to feeling gratitude and self-silencing. For many, there was a sense that they could not complain about difficult or challenging aspects of treatment, pregnancy or parenting for fear of being perceived as “ungrateful” (Abigail, Gemma, Louise) or “jinxing” (Jane, Gemma, Louise) their experience.
“There was definitely an element of, not, not wanting to complain about that. Not feeling like there was space for me to complain about that, umm [pause] because I was so grateful. I think that’s a theme that runs through pregnancy, birth, parenthood. Trying to balance my gratitude for him [her baby] and that I’d been able to have him, with acknowledging the difficulties” (Gemma).
It was difficult for conflicting emotional states to co-exist. At times this led participants to deny and dismiss their own needs, delaying help-seeking. Gemma described difficulties in accepting help postnatally, instead overcompensating and entering “supermum” mode. Some participants reported moving from longing to profound appreciation and described savouring moments with their infant. Participants felt “lucky” (Sophie, Abigail, Gemma, Miriam, Kate, Dee, Elle), attributing this to their journey to become parents adding to “patience” (Kate) and feeling better equipped to deal with the challenges associated with parenting. For others, it took time to process baby’s safe arrival and adjust, feeling guilty for not feeling the way they thought they should.
“I’ve longed for this baby for so long and now I don’t even feel grateful, and I really felt horrendous about that. We’ve been so desperate for this baby, and I can’t even like, I didn’t feel positive about him at all….I really wanted this and now I’ve got it, I don’t even appreciate it…That first three months, I didn’t really feel excited by his arrival or anything …it felt like a shock still to be honest, that he was here and he was alive” (Elle).
Subordinate theme 1.4- Compounding losses and expanding grief
Interviews revealed the sheer extent of participants’ losses resulting from IVF which went largely unrecognised, meaning they carried unprocessed grief into their onward pregnancy. Participants spoke about loss and grief layers associated with MAC; a repeated, cumulative loss beginning long before successful pregnancy was achieved.
“There is a lot of grief and loss in IVF and pregnancy. There’s the initial grief of not being able to conceive naturally. There is the grief and loss of the cycles not working initially or something going wrong or having bad news delivered to you about egg reserves, sperm count, that kind of thing. Umm, and then there’s sometimes the grief and loss of sometimes actually losing a pregnancy, a miscarriage or in my case, a stillbirth. So, there’s all these layers of loss and grief and bereavement actually whilst you’re going through the otherwise stressful journey of pregnancy” (Abigail).
Participants reflected on loss of the hoped-for conception which often linked to intimacy, shaped by societal norms and dominant cultural narratives. The misconceptions regarding IVF in society, such as it being the “easy” option (Ever-Hopeful, Gemma, Dee) with certainty of a baby, meant individuals felt underrepresented and marginalised.
For participants who had undergone repeated IVF treatments, there was a sense of loss with each failed attempt. Some experienced miscarriage, recurrent miscarriage and, for Abigail, stillbirth. These emotionally painful and traumatic experiences impacted future pregnancy experiences.
Superordinate theme 2 - The fragility of pregnancy: helpless and existing in a world of uncertainty
This was the theme most commonly discussed by participants. Jane and Kate likened the insurmountable feelings within the journey to pregnancy to “climbing a mountain”. This theme, with two subthemes, explored how participants responded to, and navigated, their pregnancy. It provides a deeper understanding of psychological responses, parental vulnerabilities, and protective measures individuals took throughout the process.
Subordinate theme 2.1- Living in fear: doubt in the self, doubt in the process
Pregnancy after IVF was viewed with no guarantees, and an overwhelming sense of defying the odds, which contributed towards pregnancy feeling “fragile” (Abigail, Louise), “precious” (Ever-Hopeful, Elle, Abigail) and the “stakes are higher” (Gemma). Participants reported shifting concerns and approached pregnancy with caution, doubt and trepidation; pregnancy loss fears were associated with anxiety, rumination and hypervigilance.
“…just really thought, if we, if I was pregnant that the baby would die. I just really thought that I was going to have a miscarriage…I was just constantly checking for bleeding. I would be inspecting my underwear (laughter). Yeah, I don’t know I couldn’t accept, but I just found it really hard. I am not saying every moment I was a nervous wreck, but I would say my underlying thought was worry” (Elle).
For some, like Ever-Hopeful, this was their last treatment cycle, leading to fear of losing the parental dream. Despite this, Ever-Hopeful reflected on her joy at the pregnancy and reported “excitement” as the dominant emotion, which contrasted to other interviews, characterised by disbelief and worry. Anxiety often led participants to reassurance-seeking to alleviate distress, repeatedly performing pregnancy tests and booking additional ultrasound scans. Participants needed to see or feel the pregnancy to believe it and described “existing” during this time, living “appointment to appointment” (Dee, Louise, Miriam). Anxiety often accumulated before or during a scan, followed by fleeting “euphoria”:
“Umm, but it - the euphoria- probably doesn’t even last a day, if that… I’m always in my head thinking, a scan is only as ever good as the day you’ve had it. They did help a lot. I mean, I couldn’t have done it without them because I just lived from scan to scan to see if it was progressing or not” (Louise).
These fears often meant participants acted cautiously to optimise the baby’s survival. For some, this led to “overthinking” (Sophie) and changes to lifestyle. One participant (Dee) chose to take time off work during early pregnancy to reduce physical demands and stress, whilst Frankie perceived her employers to be overprotective and cautious when encouraging her to work from home during the Covid-19 pandemic, contrasting with her desire to retain a sense of normality.
After multiple failed IVF cycles, Sophie (whose partner was non-binary) described questioning whether her pregnancy was “meant to be”, leading to fears and reservations about her ability to “stay pregnant”. Those participants who sought IVF for fertility challenges often described lacking trust in their bodies’ capabilities and fear that they could not sustain the pregnancy. They described pressure and responsibility adding to apprehension and fear.
“Errrm, can I do it? Am err, am I going to be able to do it? Am I going to be able to keep this person, this little thing alive? You know, can, yeah, can, can my body sustain him? Can you know, can I get through the next nine months without something going wrong and...you know, am I going to be able to keep the two of us alive kind of thing” (Frankie).
The emotional complexity that accompanied pregnancy impacted enjoyment. For many, pregnancy milestones were significant, particularly reaching 24 weeks gestation when the baby would likely survive. Throughout pregnancy anxiety remained, with a sense that participants could “never completely relax” (Sophie). Persisting fears often intensified as the birth approached, switching to stillbirth fears.
Subordinate theme 2.2- The invisible shield: protecting the self
Participants reported “disbelief” (Miriam, Abigail, Frankie) and difficulties in believing the pregnancy would be successful. For many, this was viewed as a form of coping and self-protection, defending against disappointment and loss. Participants often reported difficulties in saying the words “I am pregnant” and instead opted to use scientific terminology, such as embryo, creating distance and disconnect. For some, like Gemma, forming a childless identity helped to manage distress associated with her infertility. For others like Tel, difficulties believing the pregnancy were grounded in the IVF process itself:
“And something like IVF, I mean we were quite lucky in that my IVF cycle worked first time, but that doesn’t mean that it wasn’t a traumatising experience…because your brain’s still stuck in that difficult process... you are still in so much of a mess of what’s actually happened to get there that I don’t think you can actually feel the positive result for quite a long time” (Tel).
Participants spoke about “thinking the worst” (Jane, Gemma, Elle) to emotionally prepare themselves for any anticipated or experienced loss, meaning they were often left feeling anxious, ruminating on negative thoughts. Many reported conscious attempts to block these feelings out and described themselves as “guarded” (Jane) and emotionally detached in response.
“…I think I was probably quite numb about it, like I just, I had got it into my head and that’s the way it’s going to be. Like, I wasn’t going to have this baby… Maybe it was like that…the whole process of infertility and conception and IVF had just been so overwhelming that I think my go to was “it’s not going to happen” (Elle).
Participants reflected on their difficulties in planning and imagining a future with a baby. For many this resulted in delayed preparations, such as buying items, informing themselves regarding birth and preparing the nursery. Participants described often feeling removed or disengaged despite completing these activities.
“My Mum and Dad did a lot of the buying because I was like “I’m not ready to do that yet”. Even getting the nursery ready, I didn’t go in. I didn’t go in the room. Everything was done later so my husband and my Dad did his room. Errr, I didn’t really. I only went in to put some towels in a cupboard, but that was it, but I would very rarely, and I would leave the door closed too” (Dee).
Contrastingly, Ever-Hopeful started preparing for the baby’s arrival “really early” and reflected on her enjoyment in the process and feelings of acceptance.
Superordinate theme 3 -Parental function of healthcare systems: needing an anchor and a sense of safety
This theme, and its three subthemes, encapsulated varying healthcare experiences in light of IVF-assisted conception. It provided further insight into individuals’ care needs, available support and suggestions for the future.
Subordinate theme 3.1- Power and control in health services: a place of safety or threat
Participants described feeling “abandoned” (Abigail) and lost in “limbo” (Kate, Abigail) after being discharged from the fertility centres. There was a perceived “gap” (Sophie) in care before being seen by routine antenatal services.
“…but there is a gap between 8 weeks and you being picked up and being booked by the midwife at 10–11 weeks There is a few weeks where you are in limbo land and it’s a bit weird cause you’re not really under anybody, only really the GP, so it is a bit of a weird gap…You just kinda want to get to that first midwife appointment and get to that scan and that time again, it just drags. It’s really, really long” (Sophie).
Routine antenatal care contrasted significantly to the intense relationship with the fertility centre which involved frequent contact with familiar staff who knew their histories. Abigail described being “thrust into a world of normal pregnant people”, highlighting this sense of difference, often requiring additional support and understanding from health professionals. Other participants, such as Tel, experienced the transition in care positively, feeling free of IVF “labels”.
“Being discharged from that side of things was actually a really nice feeling. I remember that feeling because at that point I just felt normal. Like a normal pregnant person rather than a person who was undergoing IVF treatment” (Tel).
When transferred to routine antenatal care, little attention was given to individuals’ journeys to conception, which was often described as invalidating. When this was disclosed, participants felt health professionals had limited understanding and knowledge regarding IVF, making insensitive comments which added to their distress. Furthermore, this lack of knowledge burdened individuals, who were often required to take on the educator role during an emotionally vulnerable time.
“People don’t even understand what it is [IVF]. I just felt like no-one had a clue what you are talking about. You’re kinda half educating them as you go along which you don’t want to do when you are feeling so vulnerable…” (Louise).
Lack of understanding and awareness was reported postnatally. Dee and Miriam reported suboptimal postnatal recognition and acknowledgement of their emotional well-being and conception history. Miriam discussed her distress at repeatedly being offered contraception despite declining and informing health professionals of her route to parenthood and her desire to achieve pregnancy again.
The absence of ongoing contact with IVF specialists, coupled with the lack of knowledge, meant services did not meet individuals’ needs, which then often led participants to embark on their own knowledge quest, relying on the internet and online communities to provide answers.
In addition, system disintegration was consistently reported, characterised by inconsistent responses and poor communication between health professionals which caused confusion, distrust and anxiety. Frankie described feeling “dictated” to with her own views and wishes invalidated and ignored.
Subordinate theme 3.2- A need for specialist services
Participants reported amplified care needs based on their conception mode; for example, a need for reassurance, containment, and emotional support. Participants spoke passionately about the need for specialist services with dedicated midwives and consultants, specifically trained in fertility, MAC and loss. They valued clinicians who took the time to understand their story, acknowledge their IVF experience, and tailored care to their individual needs. Many participants expressed a need for reduced wait times, more frequent scans and appointments with consistent staff members, specifically in early pregnancy when anxiety is highest. Clinicians’ interpersonal skills were frequently remarked upon. Valued qualities included interest, empathy, validation and clear, sensitive communication, the opportunity to ask questions, and being given options and choices.
Despite known higher anxiety rates in individuals pregnant following MAC, participants reported that this did not translate to practice. This lack of acknowledgement of individuals’ emotional well-being meant their psychological needs were largely neglected.
“…no-one really sort of spoke to me about the fact that my pregnancy might be difficult after IVF in terms of anxiety, AT ALL…it very much felt like, you know, you’re pregnant, you know…enjoy it! [slight laughter]” (Miriam).
Furthermore, psychological support was rarely available, particularly antenatally. Participants reflected on the need for continued psychological assessment and tailored psychological support beyond the IVF conception.
“…and the offer of a counselling service. I mean there is a mental health midwife you can contact… when I was going through IVF, counselling was, it was more expected as part of it. Whereas when you were pregnant it felt like any mental health support was like an emergency kind of thing rather than, it being encouraged, and people need that” (Abigail).
Subordinate theme 3.3- Keeping afloat whilst riding the wave
How participants managed and coped with associated difficulties during pregnancy and parenting was explored. Participants spoke of “riding the wave” of emotions (Gemma). Perceived social stigma and lack of acknowledgement of participants’ emotional experience led to attempts to suppress and deny their feelings. Participants described “getting on with things”, frequently using distractions.
Participants discussed benefits of talking to those who understood, reflecting the power of normalisation and shared experience. Sophie and Ever-Hopeful discussed receiving this support from their partners and support networks; others sought out belonging and connection via online communities or in-person peer support groups.
“I was lucky to have that support group. … I think for me, peer support was just the most important thing in my whole journey umm, you know and if that could be, rather than it being the domain of just a random counsellor who had managed to set up this group, if that could be integrated into care more consistently that would be amazing” (Abigail).
For Elle, Louise, Gemma and Tel, who did not attend a support group, there was an expressed desire for this support. Contrastingly, Kate did not find others’ stories helpful and was instead “grounded” by statistics,. Participants reflected on self-empowerment through various means, such as lifestyle changes, educating themselves and seeking holistic care outside the NHS including acupuncture and yoga.
The ‘double-edged sword’ of monitoring fetal movements was discussed by all participants. Individuals found movements reassuring. However, fetal inactivity periods caused acute anxiety. Participants were grateful for maternity triage services which allowed extra monitoring, helping them to contain anxiety and provide reassurance. When there was a positive, trusting relationship with the healthcare team, this was praised and reported as a protective factor. In these instances, those providing care fulfilled a parental function, identifying an individual’s needs, responding to them and providing containment, both practically and emotionally.
“It was just such a supportive environment... I think I had developed, a relationship with the hospital and feeling safe and knowing everything had been done to get [baby’s name] here safely and to support me and to do everything regardless of how silly my anxiety might have been or not that my anxiety was silly, but more the questions that I asked when I was anxious. And errm, the reassurance, it was just like, a weight was lifted” (Dee).