A total of 33,261 records were identified through the six databases used in this review. A further 12 records were found as a result of the additional searches. A PRISMA flowchart (Figure 1) presents an overview of the identification and screening process of included studies. 5,523 duplicates were removed, the title and abstract of the remaining 27,738 records were screened and 179 records were assessed as eligible for full text screening. Due to this high volume of studies yielded from the original search (March 2020), the research team agreed to enhance the initial exclusion criteria to ensure a manageable review. The deviations from the original protocol are detailed in Table 3 and an updated search was carried out in August 2021 following the same process using the enhanced exclusion criteria. The updated search in August 2021 followed the same process using the enhanced exclusion criteria (Table 3). With the amended criteria, 89 records were excluded. The full text of 90 records were screened, 60 of which were excluded. A total of 30 records (26 identified from the original search (March 2020) and 4 from the updated search (August 2021)) were selected for inclusion in this review and were agreed upon by all authors.
Of the thirty records, twenty-four were qualitative, five quantitative and one mixed-methods (Asplin et al., 2014; Atienza-Carrasco et al., 2020; Carlsson et al., 2016; Chaloumsuk, 2013; Cowchock et al., 2011; Dekkers et al., 2019; Desrochers, 2011; Fisher and Lafarge, 2015; Fisher et al., 2015; Gawron et al., 2013; Hassan, 2015; Irani et al., 2019; Kamranpour et al., 2020a; 2021 Kecir et al., 2021; Koponen et al., 2013; Lafarge et al., 2013; Lafarge et al., 2019; Leichtentritt, 2011; Leichtentritt and Weinberg-Kurnik, 2016; Leichtentritt and Mahat-Shamir, 2017; Lotto et al., 2016; Mitchell, 2016; Obst et al., 2020; Pitt et al., 2016; Qin et al., 2019; Ramdaney et al., 2015; Smith et al., 2020a; Sun et al., 2018; Zareba et al., 2018). The findings presented are based on twenty-eight studies as findings from two studies are reported in four records (Fisher and Lafarge, 2015 and Fisher et al., 2015; and Kamranpour et al., 2020a; 2021). The records were published between 2010 and 2021, with the majority (22) published in 2015 or after (see Figure 2). Sample size of included studies ranged from 7 - 361 participants, with an average of 48 participants per study. Eighteen studies included women only, five involved men only and five included both women and men. Collectively, this review is based on a total sample size of 1,227 women and 114 men.
Five overarching themes emerged from the synthesis of findings: (1) Context of Care, (2) Person-centred Care, (3) Compassionate Care, (4) Co-ordinated Care, and (5) Inclusive Care. Table 4 summarises the themes and subthemes identified as part of this narrative synthesis. For ease of reading, throughout the findings section, references to the reviewed studies are made using numbers as displayed in Table 2.
Context of Care
Political, legal and cultural contexts are pertinent to both the healthcare system and experience of parents undergoing a TOPFA and can shape and impact healthcare service provision, directly and indirectly, including how it is accessed and experienced. Despite TOPFA being legal in 113 countries (Remez et al., 2020), 15 countries of which are represented in this review, there is evidence from the studies that parents’ experiences of TOPFA were impacted negatively by wider contextual factors including legislation, local procedures, professional practices and societal attitudes about TOP (10, 12, 13, 17, 21, 24, 30).
Challenges associated with legislation and policy included access to and availability of healthcare. These impacted on parents in a variety of ways, from having to travel or self-fund to access a TOPFA, to experiencing delays because of administrative ‘red-tape’ which led to delays in decision-making and referrals for the termination, leaving parents anxious about whether the outcome would support their choice or not (10, 19, 20, 21, 24).
Funding of the TOP was a pertinent issue for participants from studies in the USA where private medical insurance added a layer of complexity and debate over whether the procedure was ‘elective’ or ‘medical’ with the answer determining whether funding would be provided or not (10). This led to women taking action into their own hands with one woman, while awaiting insurance approval searching ways to ‘self-abort’, and another self-funding the procedure (10). An Iranian study (13) also reported on the financial issues experienced by parents, with some not able to access advanced screening or diagnostic tests and services such as genetic and psychological counselling due to high costs.
Most records (26 out of 30) addressed parents’ need for information and the impact it had on their experience (1-20, 22, 24, 26, 28, 29, 30). While most parents acquired information themselves from a range of sources, such as, “healthcare professionals, books, the Internet and from individuals who have been in similar situations” (11), clear and unbiased information provided by healthcare professionals was greatly valued. When parents were given relevant and timely information, particularly about the diagnosed anomaly and healthcare procedures (1-6, 8, 9, 11, 12, 14, 17, 18, 19, 22, 24, 26, 28, 29, 30), it had a positive impact by reducing their fears and worries, helping them understand their choices, feeling more empowered (1-4, 8, 10, 11, 12, 16, 17, 19, 22, 24, 29, 30). Parents who felt ill-informed at any stage in the process felt less well-prepared physically and psychologically about what to expect and, for some, their experience was more traumatic (1-4, 8, 9, 10, 11, 13, 14, 16, 19, 20, 22, 29).
Some studies reported parents’ frustration at trying to find information, while others expressed frustration about inconsistent and conflicting information (1, 2, 8, 10, 11, 16, 19), “every time I phoned asking this very same question, I received different answers. Very exhausting” (1). This also resulted in dissatisfaction and suspicion about the quality of any information provided, with some feeling that medical staff were withholding information, “we deserved to know what they knew” (10). Being given inappropriate information was distressing, “[it was unhelpful] being handed a leaﬂet about dealing with a miscarriage almost immediately afterwards when I was clearly dealing with an awful decision which was NOT a miscarriage” (8).
Several studies reported how parents rated the way information was communicated to them (1-5, 8, 11, 16, 17, 18, 19, 21, 22, 24, 28). Parents generally felt that written information without the opportunity to discuss it and ask questions was not helpful, “they just gave me a piece of paper [a brochure], but that’s not the same as actually talking it through with someone in person” (16). There was no consensus about the use of language by healthcare providers, with some parents critical of the use of medicalised terminology (2, 8, 11, 16, 19, 21), for example, referring to the baby as a “product of conception” (8) while others were critical of those who referred, “to the fetus as a baby” (8).
For many study participants the point of diagnosis was pivotal, marking the beginning of a different journey where decisions about the future of the pregnancy had to be made (2, 3, 4, 7, 10, 11, 12, 15, 18, 24, 25, 26) and was emotional and stressful (2, 3, 4, 7, 8, 11, 12, 15, 16, 18, 19, 26, 27). Overall, being given choices was seen as positive and empowering, not just the choice to end the pregnancy but other choices throughout the process (1, 2, 6, 7, 8, 9, 10, 11, 16, 18, 19, 24, 26, 27), but making the choices was also difficult involving conflicting feelings. Pain relief, for example, was identified as an important choice by some, both the choice to have it and the choice of what pain relief medication they had (1, 2, 3, 16, 17, 19, 22). Being overwhelmed by the choices and decisions to be made was reported in several studies (2, 3, 4, 6, 7, 8, 9, 11, 14, 18, 26, 29). A study which focused entirely on whether women were given a choice of method of TOPFA (9) found that only 14% of the sample were, with this number falling to 8% after 14 weeks gestation.
Healthcare providers’ capacity to provide compassionate and empathetic care presented as potentially the most influential element in how parents perceived their experience, positively and negatively. It was explored in 21 out of the 30 records (1-8, 11, 12, 13, 15, 16, 17, 18, 19, 21, 22, 24, 28, 30). Women were most satisfied with providers when they responded to their communication and emotional needs (1-6, 8, 11, 12, 16, 17, 18, 19, 21, 22, 28, 30), as highlighted in a UK study, “The consultant also held my hand tight . . . this warmth from the staff I will always remember” (17). A perceived lack of empathy and kindness had lasting impact after the experience, as highlighted by a study in Canada and USA, "the supervisor nurse was kind of brusque and not very friendly and I unfortunately remember that quite clearly" (11).
Healthcare professionals who were perceived to be non-judgmental and who showed kindness and support for parents was greatly valued, “one of the kindest people during the whole process was the anaesthesiologist who held my hand ….and said he understood I was making the right choice” (11). The importance of non-judgmental staff was highlighted as a recurring theme linked to stigma, which was reported in eleven studies (2, 7, 8, 10, 11, 12, 18, 19, 22, 24, 30). Parents used words such as ‘shame’ and ‘guilt’ to describe how they felt, and perceived judgement or stigmatisation from healthcare professionals was experienced negatively, “I felt she [midwife] made me feel unworthy for my decision” (8).
Parents appreciated practitioners who cared for their baby with tenderness (8, 11, 16, 17, 18, 22, 23, 24, 29), “the care and attention the midwife on duty showed to our son, … talking to him as she washed and dressed him” (8) and were distressed when this was not the case. While some parents were ambivalent about spending time with their baby, most positive experiences were reported by those parents who were encouraged and helped to create memories as well as being given as much time as they wanted with their baby (2, 3, 4, 6, 11, 15, 16, 17, 18, 21, 22, 23, 24, 29). The facilitation of this by health practitioners was appreciated by parents, “we were allowed to look at him in peace. He was only taken away when we were ready” (16).
Parents valued being cared for by experienced members of staff (1, 4, 6, 8, 10, 11, 13, 15, 16, 22, 26) and found it reassuring, “I felt I was being treated by experts” (8). Conversely, being cared for by junior or inexperienced members of staff was found to be distressing and impacted on how confident and safe parents felt by their care, “normal midwives seemed not to know what to do. One told me that she had never delivered a stillborn baby. This was the last thing I needed to hear” (8).
Well organised care, which is timely, efficient, and properly resourced was identified as a major contributor in parent satisfaction and was addressed in 18 of the 30 included records (1, 2, 4, 5, 8, 9, 10, 11, 13, 15, 18, 19, 21, 22, 24, 25, 27, 29). Delays in appointments for further diagnostic tests and slow turnaround times for results were experienced as frustrating and increased parents’ anxiety (2, 8, 9, 10, 11, 18, 19, 24, 30). Any delay post diagnosis was significant and, in some cases, seemed to impact on the choices available due to the gestational age of the fetus (8, 9, 10, 11, 18, 19). One UK study reported, “increasing pressures around 13–14 weeks’ gestation, after which surgical terminations are harder to access in the NHS” (8). Any obstacle or delay once the decision to have a TOPFA had been made increased parent’s stress with one participant comparing the wait for the procedure as, “being on death row” (8).
Positive experiences of the healthcare system were reported in terms of the capacity and flexibility of the system and the willingness of staff to be responsive to the particular circumstances of parents (1, 4, 8, 15). This included fast-tracking people for basic procedures, such blood samples, so they did not have any additional waiting (8, 25). There was also appreciation when staff ensured women spent little time in open public waiting areas or escorted them quickly and discreetly to a private space (4, 8, 11, 22). Satisfaction was also expressed when staff helped make others aware of their loss to avoid inappropriate comments or questions by staff, “they put a white flower on my door to let them (the staff) know that I was not leaving with a baby” (11).
Co-ordination and continuity of care were also highlighted as important elements of effective care (1, 2, 4, 5, 8, 9, 10, 11, 13, 18, 19, 21, 22, 25, 29, 30). In some instances, the handover of a woman’s medical history, notes and ongoing care between practitioners were inadequate, meaning those taking over the care were ill-informed, resulting in poor communication (1, 2, 4, 8, 17). Failure to read case notes before seeing a patient led to upsetting experiences for some parents, “I had to tell her the baby had died. She hadn’t read the notes properly! I was furious and very distressed” (17). For some, seeing a different doctor every time they attended the clinic impacted on their confidence and resulted in them withholding their fears and concerns (2). A call for continuity of care was specifically reported in four studies (1, 2, 8, 22).
In terms of setting, TOPFAs were carried out in hospital, clinic settings and in abortion clinics. Ten records explored the significance to parents about being cared for in an appropriate environment (2, 4, 8, 11, 13, 19, 22, 23, 25, 29). Negative experiences included, being surrounded by women with healthy pregnancies, being close to new mothers and crying newborns, physical indicators of celebration for a newborn, posters on walls of healthy newborns, waiting with women getting an early abortion for an unwanted pregnancy, or waiting with women going for a caesarean section.
There was no consensus about parents’ preferences on the most appropriate environment. For those at an earlier gestation, gynaecological wards were preferred by some who wished to avoid being in close proximity to newborns (8) and found the experience of being cared for in settings where other people were giving birth uncomfortable (2, 4, 11, 22, 25, 29). For others being in a delivery unit validated them as “a pregnant mum” (8) and the gynaecological ward felt inappropriate as it didn’t acknowledge their pregnancy was wanted and being separated from ‘normal birth’ compounded their sense of isolation (8, 22).
Aftercare was identified by some parents as a gap in the services available to them within the healthcare system, and for many was not routinely provided (1, 2, 3, 6, 7, 8, 11, 13, 14, 16, 17, 20, 24, 27, 28). In the absence of aftercare being provided women expected and wanted healthcare practitioners to signpost them to support organisations (1, 2, 6, 7, 8, 11, 16, 17, 22, 25, 27, 28). However, it was reported that this often did not happen, and they had to assume personal responsibility to find, and in some cases privately fund aftercare (1, 2, 3, 6, 7, 8, 11, 16, 17, 22). For those who were signposted to or who accessed aftercare, they found it to be helpful and beneficial (1, 2, 3, 4, 5, 7, 8, 10, 11, 17, 21, 26), “the care was very good. [The] bereavement midwife [was] excellent and I saw her lots after” (8). Parents expressed the view that the aftercare for those who had undergone TOPFA should be bespoke as it was not the same as other perinatal losses and support groups for other infant losses were mostly considered to be unhelpful or inappropriate (1, 2, 8, 11, 17, 22, 24). Preparation, information, and support before a potential future pregnancy was also raised as a concern and need for parents in two studies (14, 28).
Several studies reported that many partners felt excluded or ignored by healthcare staff, and highlighted how the healthcare system in general, and organisational issues in particular, were not designed to cater for them or enable them to support the pregnant woman (7, 13, 15, 20, 22, 24, 29), “it’s a no man’s land” (20). Partners often felt excluded, ill-prepared and unwelcome, with a partner in one study stating, “it does feel a bit like they forget the father sometimes you know. It was like the bed in the hospital and there was no bed for me. You know, not even a blanket, and [the midwife] said there wasn’t enough pillows [for me to have one]” (22). Some rationalised their exclusion because, “pregnancy is a woman’s issue” (20). Additional to the hospital environment, fathers also reported a lack of specific aftercare and support targeted towards men, resulting in them feeling uncertain and conflicted between their roles as grieving father and supporting their partner (24).
In some studies, partners identified themselves as the main or only support for their pregnant partner (6, 7, 15, 20, 24, 29). Women also recognised the central support role their partners played (2, 4, 10, 17, 22, 30). While partners wanted to care and support their pregnant partner throughout the process, this was more difficult for some when there was, “little professional assistance, empathy or caring”
(20). One woman reported, “my husband actually delivered the baby ‘cause there was nobody there”
(22). In another case, the partner reported, “she was bleeding … and they [professionals] did nothing! I felt abandoned…. I took care of her”
(20). Partners, in these circumstances, felt, “forced to take the situation in your own hands”
(20). When professionals supported women and their partners, the experiences of partners were much more positive, “all the people who assisted us […] were very competent and very nice and that greatly helped”