Thematic analysis of a United Kingdom-wide survey to explore women's perceptions and concerns about assisted reproductive technology.

Participants were identified by convenience (volunteer) sampling, where participants volunteered to take part in the survey. Women who underwent ART, were considering ART, or conceived naturally were invited to participate. The cross-sectional, English, online survey was designed and hosted on Qualtrics. It was distributed via Fertility Network UK’s social media channels (Instagram, Facebook and Twitter/X), which collectively reach over two million users annually. The charity provides support for people with fertility issues across the UK and has over 57,000 members in its support groups ( Fertility Network UK, c.2025 ). No paid advertisements were used. To extend visibility, the survey link was also shared with our broader research network by being pinned on the websites of our larger studies ( ENCHANT Research Group, 2022 ; LIFT Research Group, 2022 ). A background information page was provided before displaying the survey questions. This outlined the survey’s rationale, target audience and examples of our team’s national database studies for context. We broadly referenced the intended methodology of our national database studies, without specifying the study name, to explore perceptions more generally and avoid bias ( Perrotta et al., 2025 ). Participants were not asked about their willingness to participate or to compare database studies with other research designs. The ensuing survey collected data across four domains ( Table 1 ) to address our objectives as described previously in the Introduction. All survey questions were optional. The survey was anonymous and did not capture any personal identifiable data. The survey was active for 8 months from 14 July 2023 to 14 March 2024. Qualitative analysis of free-text responses (Q3–14) followed Braun and Clarke’s (2006) thematic analysis using an inductive, semantic and post-positivist approach, whereby themes were derived from the data, reflected the explicit meaning of responses, and triangulated through team discussion and quantitative findings, respectively. Each phase of the analysis was further guided by Nowell et al.’s (2017) approach to establish trustworthiness, as detailed below. LYFW manually coded all responses on NVivo 14 and connected the codes into broader themes and sub-themes. The resulting codebook was independently reviewed by FA and discussed in monthly team meetings involving the core researchers (FA, LYFW, MP and YL) to gather feedback and achieve consensus on the coding. This review process was repeated 5–7 times for each open-ended question to iteratively revise the themes, with reflexive memos and audit trails documented throughout. Revisions primarily aimed to improve clarity and ensure accurate representation of the responses. Code frequencies were counted to derive percentages for comparison across questions, and illustrative quotes were identified to support our findings. In our survey design, some questions were not applicable (N/A) to certain respondents, e.g. questions on treatment year or provider (Q8, 9) did not apply to respondents who were still considering treatment (Q1), questions on information provision regarding the ART-conceived child’s health or educational outcomes (Q4, 6) did not apply to those with unsuccessful childbirth (Q2). Therefore, some participants responded with ‘N/A’ and these responses were excluded from the analysis using pairwise deletion as they did not provide meaningful qualitative data under our semantic approach ( Byrne, 2022 ). Quantitative analysis of categorical responses (Q1, 2 and 15–17) was performed to produce descriptive statistics. Due to cells with zero values and uneven distributions in respondent characteristics, Fisher’s exact test was used to compare group differences in these characteristics, with statistical significance set at two-tailed p < 0.05. Sensitivity analyses excluding ‘Did not answer’ (i.e. missing responses) or ‘N/A’ responses were performed to assess the impact of survey completion on the findings. All analyses were conducted on StataNow/MP 18.5. Ethical approval was obtained from University College London’s Research Ethics Committee (28371/001). A disclaimer was added to the participant information sheet with contact details of Fertility Network UK. This was to ensure that participants were provided adequate support if they were concerned or affected by any survey questions. All participants provided informed consent to participate in the research.

Of the 1273 times the survey was accessed, 575 responses were submitted. Thirteen submissions provided empty answers to all questions and were excluded; therefore, 562 participants were included for analysis (completion rate 44.1%). As participation in each question was optional, the total number of responses varied across questions ( Table 1 ; mean ± SD 454 ± 91 responses) and only Q1 achieved complete response. Item response rates were highest in Domain 1 (mean 95.7%) and lowest in Domain 4 (mean 59.4%). Themes are presented in the following headings, and sub-themes are presented in Tables 3 – 5 . Most respondents were 25–40 years old (72.4%), White (90.2%) and held a university degree or higher qualification (84.9%) ( Table 2 ). A significant difference was found between age group and fertility treatment stage (p = 0.012), with the highest ART engagement among women at the typical reproductive age of 25–40. Ethnicity and education did not differ significantly across treatment stages. Most fertility treatments were undertaken in the 2020s (62.8%), and over half resulted in successful childbirth (52.3%). Around one-third of respondents underwent fertility treatment in the private sector (37.9%) and a similar proportion through the public National Health Service (NHS) (31.9%). Of the 19.9% who attended both, some switched from NHS to private treatment (n = 34), mentioning push factors such as lack of funding ( ‘One cycle NHS, then funding was revoked in the area and went privately’ , P98) and failed rounds ( ‘Initially NHS clinic unsuccessfully and then private clinic successfully’ , P140). Few switched from private to NHS (n = 6): ‘First private for IUI then NHS for IVF’ (P106). As expected, women who had undergone treatment had different ART-specific experiences, including childbirth following ART, treatment year and treatment provider (all p < 0.001), compared to those only considering treatment or who had conceived naturally. Sensitivity analyses excluding ‘Did not answer’ or ‘N/A’ responses showed no change in significance across all questions in Table 2 . Questions on fertility treatment (missingness: 11.0% in Q8 and 8.9% in Q9) were generally skipped more frequently than demographic questions (2.8–3.4%) ( Table 2 ). As expected, over half of the women who were considering fertility treatment skipped questions related to receiving fertility treatment (59.7% in Q8 and 53.2% in Q9). Overall, almost half of respondents (48.6% in Q10) had not considered potential short- and long-term health outcomes of ART. In particular, over half (51.8% in Q11, 66.9% in Q3 and 82.5% in Q5) reported no concerns about its long-term outcomes with regard to: respondent’s own health ( ‘No, perhaps I’m blissfully unaware’ , P16, age 25–40, unsuccessful fertility treatment); child’s health ( ‘No, at the moment I just want a child’ , P237, age 25–40, considering fertility treatment); and child’s education ( ‘Not at all, she is doing very well at school and is in year 7 ′, P176, age 40–60, successful fertility treatment), listed from most to least concerned. The breadth of concerns expressed by the remaining respondents is shown in Figure 1 , with the top three concerns summarised in Table 3 . Regarding maternal health, the most common concerns were related to women’s reproductive outcomes, cancer risks and endocrine effects. The impact of hormonal treatment emerged as a recurring theme underpinning the above concerns ( Table 3 ). Regarding child’s health, participants most frequently raised concerns about child reproductive, neurodevelopmental and developmental outcomes. A sense of guilt, worry and uncertainty, particularly around the perceived generational implications of passing on fertility issues, was reflected in participant quotes ( Table 3 ): ‘They could possibly have the same fertility issues as us, their parents’ (P446, age 25–40, considering fertility treatment). Regarding child’s education, concerns were mainly about neurodevelopmental outcomes, child development and learning difficulties. Autism and attention deficit hyperactivity disorder were reported among the more common concerns in child health and education ( Figures 1A – 1B ). Of the participants who did not consider potential short- and long-term ART outcomes (48.6%), 14 explained that they believed the benefits of ART outweighed the risks. Other respondents had considered short-term (7.2%) more than long-term (4.4%) health outcomes. Short-term outcomes considered included hormonal exposure, ovarian hyperstimulation syndrome and weight changes; long-term outcomes considered included mental health, reproductive health and cancer. Sixteen participants noted concerns arose after treatment, eight during treatment and six before treatment. Participant quotes suggested these concerns may reflect the perceived adequacy of information provision ( Table 3 ). Overall, most respondents reported that fertility clinics did not provide information on health and educational outcomes following ART and that, when provided, healthcare professionals or videos were the most common channels of communication. Most participants said that no information about child health (75.2%) and educational outcomes (91.9%) was presented. As a result, some participants had to conduct their own independent research for self-education ( Table 4 ). Only a small proportion (<10%) reported that such information was provided by healthcare professionals and videos. Furthermore, 56.6% of participants said that no information was provided about their own health outcomes following fertility treatment: ‘I have no idea what I should be worried about, my private fertility clinic never explained any risks or research findings with me’ (P412, age 25–40, unsuccessful fertility treatment). More than half (54.8%) had positive views about researchers accessing existing large national datasets to retrieve and analyse information about children’s health and educational outcomes: ‘I agree with the methodology. Analysing anonymous data is a good option to ensure privacy of patients’ (P1, age 25–40, successful fertility treatment) ( Table 5 ). Some had negative perceptions (13.2%) or concerns (5.5%). In terms of the use of large patient datasets to retrieve information, a higher proportion (68.3%) had positive perceptions of its usefulness: ‘Studies like these will help those considering fertility treatment in the future’ (P50, age 25–40, successful fertility treatment). Others had negative perceptions (12.5%) or conditional perceptions related to data confidentiality (3.2%). Regarding dissemination of findings, participants expressed that study findings should be disseminated prior to treatment (7.8%), by healthcare professionals (6.5%) and sensitively (4.5%), e.g. ‘People should be informed of potential risks when they have their first appointment with IVF clinic and further discussion should be offered’ (P86, age 25–40, successful fertility treatment).

Most women who responded reported no concerns about, or that they had received no information on long-term ART outcomes in maternal health, child health and child education, while some raised important concerns about maternal and offspring outcomes. Overall, participants supported the use of national databases to investigate these outcomes, highlighting the need for appropriate dissemination, patient-centred communication and PPI-informed research that reflects their requirements and concerns.

To our knowledge, this is the first large-scale qualitative survey exploring the perceptions and concerns about ART among women. A key finding of this study is that most participants reported no concerns about the long-term outcomes of ART with regard to their own health or their child’s health and education, and interestingly, these women reported that they had received no information on these issues from clinics. Receiving limited information from clinics could prevent women from recognising potential ART outcomes that may warrant concern. The high proportion of participants reporting no concerns in this study is consistent with the results of our previous survey ( Fisher-Jeffes et al., 2006 ). Other studies have found that most fertility treatment patients hold positive attitudes about ART ( Schmidt et al., 2003 ; Szalma & Bitó, 2021 ). Meanwhile, considering it has been reported that information provision is identified by patients as their top priority in patient-centred infertility care ( Dancet et al., 2011 ), this identifies an unmet information need in both our sample and the wider literature. Wilkinson et al. (2020) have stressed that ‘the scientific community has warned of the need to inform patients about the association between ART and offspring health for more than a decade’, but Assaysh-Öberg et al. (2023) more recent meta-ethnographic analysis of 19 qualitative studies shows that women ‘felt uninformed about the long-term effects of treatment, on themselves and on their fetus and possible child’. Therefore, ART clinics have a clear responsibility to inform patients of the offspring and maternal outcomes; it should not be left to patients to conduct their own research ( Barnhart, 2013 ), as seen in participant quotes. Among those who expressed concerns, those regarding child health focused on reproductive, neurodevelopmental and developmental outcomes, while maternal concerns related to reproductive conditions, cancer risk and hormonal exposure. These findings highlight that, beyond achieving pregnancy, a small number of women undergoing or considering ART are attentive to the long-term implications of the treatment. This is often interwoven with the hope, desperation and unease they experienced during fertility treatment, as reflected in participants’ quotes. Quotes also demonstrated participants’ familiarity with medical terminology, aligning with their high educational background. Concerns about hormonal treatment side-effects ( Barrière et al., 2019 ) and reproductive conditions ( Leyser-Whalen et al., 2022 ) in women are well-documented. Conversely, although there is ample literature on potential ART-related child health outcomes ( Berntsen et al., 2019 ), studies exploring women’s perceptions of these child health outcomes are limited, as are those exploring women’s perceptions about child educational outcomes. This may suggest such concerns are generally uncommon and thus may be understudied or underreported in literature. Our findings may provide a novel contribution by describing the perceptions of the small proportion of women who expressed concerns in regard to child health and educational outcomes. Overall, respondents supported the use of national databases to investigate child outcomes and showed a preference for study findings to be communicated by healthcare professionals before treatment, while a few participants raised concerns about data confidentiality. The literature has consistently emphasised the importance of the provision of high-quality information ( Dancet et al., 2010 ) with transparency ( Perrotta et al., 2025 ), sensitivity ( Holter et al., 2021 ) and empathy by doctors ( Malin et al., 2001 ), aligning with respondents’ preferences in our study. This study’s strengths include its large UK-wide sample and comprehensive scope across short- and long-term health and educational outcomes. This is in comparison to other qualitative surveys conducted on a similar population and setting ( Boivin et al., 2020 ; Harrison et al., 2021 ; Sousa-Leite et al., 2023 ). The use of predominantly free-text questions yielded richer and more diverse qualitative insights than structured questions allow ( O’Cathain & Thomas, 2004 ), helping to address a gap in ART research that often prioritises clinical success over patient experience ( Pennings & Ombelet, 2007 ). Nonetheless, limitations should be considered when interpreting the results. Voluntary participation may have introduced self-selection bias ( Bethlehem, 2010 ), with individuals who had more adverse experiences being more likely to respond to the optional open-ended questions and thus being potentially overrepresented ( Redshaw et al., 2007 ). Recruitment was primarily conducted through a single national UK charity, which may limit representativeness despite its wide social media reach and high engagement with the UK fertility patient community. Our predominantly White, highly educated sample may further limit generalisability, though this reflects patterns reported in other qualitative ART studies ( Li et al., 2025 ; Mayette et al., 2024 ; Redshaw et al., 2007 ; Rothwell et al., 2020 ). Similarly, the age distribution of our respondents and the proportion who had undergone NHS-funded fertility treatment are comparable to those of the UK fertility patient population; however, the proportion of White respondents and the rate of successful fertility treatment in our sample are moderately higher than the national population ( Human Fertilisation & Embryology Authority, 2023b ). Our UK-based findings may not be generalisable across other countries due to social and financial differences surrounding ART ( Dancet et al., 2010 ). The cross-sectional design captures perceptions at a single time point and cannot determine how views may change throughout fertility treatment and thereafter. Thematic analysis involves subjective interpretation, although observer bias was minimised through researcher triangulation and peer debriefing ( Nowell et al., 2017 ). All survey questions were optional, and missing responses may introduce non-response bias. Although over half of those who responded viewed national database studies as useful, item response rates for questions referring to this issue were relatively low, so the extent of positive perceptions should be interpreted with caution. The use of skip logic in survey design could have directed respondents to the relevant questions, potentially reducing the number of missing or ‘N/A’ responses and improving the survey completion rate. Finally, including men’s or couple’s perspectives may offer useful comparisons with women’s views, but this was beyond the scope of this study and has been addressed in our separate survey exploring men’s perceptions ( Afzal et al., 2026 ). Women’s concerns about long-term outcomes of ART, albeit expressed by a small proportion, and their perceived lack of information provision highlight the need for patient education and patient-centred communication. Alongside the top concerns identified in this survey, validated ART questionnaires such as the Concerns During Assisted Reproductive Technologies (CART) scale ( Klonoff-Cohen & Natarajan, 2004 ) can inform clinicians about individual concerns and help tailor the content of information delivered. Information provision has been shown to reduce treatment-related concerns ( Gameiro et al., 2013 ), and formalising this through online education programmes for ART users, such as clinic-led video-based modules with comprehension assessments on common ART procedures and medications ( Bernard et al., 2022 ; Jones et al., 2020 ), can improve psychological outcomes while offering a cost-effective solution for clinics ( Cousineau et al., 2008 ). Overall, the literature supports both the feasibility and effectiveness of patient education in addressing women’s concerns. It is acknowledged that from providers’ perspectives, addressing women’s concerns amid inconclusive evidence can be challenging. Detailed explanations for communication challenges have been explored elsewhere ( Klitzman, 2018 ). In this study, healthcare professionals were the primary source of information, when it was presented, and it is important that their communication with patients must balance transparency and sensitivity. National Institute for Health and Care Excellence (2013) clinical guidelines offer clear recommendations on discussing long-term ART safety, including areas where evidence is still awaited. Although fear and anxiety were expressed by only a small proportion of respondents, provision of emotional support by fertility counsellors, clinicians and psychologists ( Dancet et al., 2011 ), targeted for those patients, may help to alleviate uncertainty through patient-centred communication. Women’s concerns about long-term outcomes, or the widespread lack of concern which may reflect limited information, emphasises the need for further national database studies, an approach broadly supported by respondents. These qualitative insights will be used to inform our national data linkage studies and guide how we disseminate their findings to key stakeholders. In line with respondents’ preferences, our results would be shared sensitively with patients, via healthcare professionals where appropriate, and ideally prior to treatment. As demonstrated in this survey and reported in the wider literature, incorporating PPI into ART studies can guide research priorities and build public trust. Trust is crucially important in fostering patient engagement with data use ( Carson et al., 2019 ), and PPI has been shown to meaningfully impact the direction of laboratory ( Fleming et al., 2021 ) and clinical research ( Healey et al., 2024 ). Additionally, qualitative longitudinal studies with focus groups or interviews could provide deeper insights into how women’s views may evolve at different treatment stages. Considering the known racial disparities in fertility research shaped by cultural and systemic factors ( Ekechi, 2021 ), future studies should consider broadening representation of Black, Asian and Minority Ethnic (BAME) populations by using multiple recruitment sources, translated survey materials and partnership with community liaison workers ( Farooqi et al., 2022 ). These strategies would facilitate culturally competent and inclusive co-production with ethnic minority communities, enabling meaningful input into future study methodology and dissemination.

Over the last 40 years, the use of assisted reproductive technology (ART), defined as ‘all treatments or procedures that include the in vitro handling of both human oocytes and sperm, or embryos, for the purpose of establishing a pregnancy’ ( Zegers-Hochschild et al., 2009 ), has steadily increased. ART procedures include in vitro fertilisation (IVF) and intra-cytoplasmic sperm injection (ICSI), but do not include intrauterine insemination (IUI). Approximately 12 million children were reported to have been born after ART worldwide ( eClinicalMedicine, 2023 ), including over 300,000 ART-conceived children in the United Kingdom (UK), with numbers increasing year-on-year ( Human Fertilisation & Embryology Authority, 2025 ). This is partially due to the prevailing social trend amongst couples towards delaying their first planned pregnancy, but could also reflect the impact of lifestyle factors and underlying chronic health conditions ( Glazer et al., 2017 ). However, data on long-term outcomes of ART remain scarce ( Pinborg et al., 2023 ) and are summarised below. Regarding maternal health, a meta-analysis has shown that ART pregnancies carry a higher risk of short-term obstetric complications, including pregnancy-induced hypertension, gestational diabetes and placental abruption, compared to natural conception ( Qin et al., 2016 ). For long-term outcomes, however, the risk of overall breast and endometrial cancers is not increased in ART patients compared to the general population, while the higher risk of ovarian cancer found in ART patients is limited to women with endometriosis and/or low parity ( Williams et al., 2018 ). Literature reporting the metabolic, endocrine and inflammatory sequelae of IVF hormonal therapies remains lacking compared to natural conception ( Coussa et al., 2020 ). Regarding child health, the short-term health implications following ART are also well-recognised: ART-conceived children have higher rates of hospital admissions ( Sutcliffe et al., 2023 ), prematurity ( Wisborg et al., 2010 ) and congenital malformation ( Qin et al., 2016 ), and lower birth weight than naturally-conceived peers. However, the potential long-term health outcomes are yet to be described definitively. For reproductive outcomes, some data suggest reduced sperm counts in ICSI-conceived male offspring, while no adverse effects were observed in female offspring ( Berntsen et al., 2019 ). However, this potential sex-specific risk is difficult for individuals contemplating ART to take into consideration, at least in the UK, where the sex of the embryo is typically undisclosed during fertility treatment ( Fox, 2009 ). Data reporting neurodevelopmental outcomes were similarly conflicted: associations with ART were often subgroup-dependent or disappeared after adjusting for multiple pregnancies ( Berntsen et al., 2019 ). Furthermore, it is unclear whether these potential adverse outcomes result from ART itself or from the underlying infertility (‘chicken-or-egg dilemma’) ( Berntsen et al., 2019 ; Graham et al., 2022 ). Understandably, such inconclusive evidence can be difficult for prospective ART patients to interpret, adding further ambiguity and concern to already complex fertility decisions that balance personal hopes with fears for the child’s long-term health. Regarding child education, four systematic reviews ( Bay et al., 2013 ; Hart & Norman, 2013 ; Middelburg et al., 2008 ; Rumbold et al., 2017 ) found no significant differences in cognitive or neuro-developmental outcomes between ART-conceived and naturally-conceived children. However, the impact of these findings was reduced both by methodological limitations of the underlying studies and by conflicting findings among high-quality studies comparing children conceived with ICSI and IVF ( Rumbold et al., 2017 ). Considering the above long-term outcomes, it is important to investigate women’s perceptions and potential concerns about ART. In our team’s 2006 survey, only a small proportion of families with ART-conceived children expressed concerns about their child’s future fertility (8%) and general health (3.6%), with even fewer concerned about their child’s educational potential (1%) ( Fisher-Jeffes et al., 2006 ). These align with previous findings showing overall low levels of maternal concern about a child’s vulnerability to illness, although IVF mothers reported significantly higher concern levels than naturally conceiving mothers ( Gibson et al., 2000 ). To our knowledge, no other recent studies have specifically examined women’s concerns about the long-term health and education of ART-conceived children. It is of interest to explore how information on the above long-term outcomes is presented to women at fertility clinics. The UK’s fertility treatment regulator, the Human Fertilisation and Embryology Authority (HFEA), has specified in their Code of Practice that fertility clinics should inform women seeking treatment of ‘the potential immediate and longer-term risks of the treatment and any treatment add-ons used, including the risks to the patient and the possibility of any children conceived having developmental and birth defects’ ( Human Fertilisation & Embryology Authority, 2023a ). However, little data exist on how these long-term maternal and offspring outcomes are presented in the UK. Current regulatory guidance on information provision at clinics also appears more focused on success rates and short-term outcomes than long-term health or educational outcomes. Insufficient information provision has been shown to undermine patient trust and satisfaction with their ART clinic ( Barrière et al., 2019 ). The HFEA has maintained a register of all fertility treatments and outcomes in the UK since 1991. This national database enables data linkage with other datasets, such as Hospital Episode Statistics ( Purkayastha et al., 2021 ) and National Pupil Database, to identify potential long-term ART outcomes on child health and education. Examples include our team’s database studies to investigate the general health outcomes of women undergoing fertility treatment and their ART-conceived children ( LIFT Research Group, 2022 ), as well as the educational outcomes of ART-conceived children ( ENCHANT Research Group, 2022 ). Published findings from these studies can support evidence-based information for ART patients and inform national policy. However, little is known about women’s perceptions of these studies. While this survey forms part of our team’s wider patient and public involvement (PPI) strategy to inform the methodology of our LIFT and ENCHANT studies, it also aims to explore patient perceptions of the usefulness and dissemination of national database studies investigating ART outcomes in child health and education. In this survey, we aim to explore women’s perceptions and concerns about ART through the following objectives: To describe participants’ demographic characteristics and experiences with fertility treatment (Domain 1) To explore participants’ concerns, if any, about the long-term ART outcomes regarding maternal health, child health and child education (Domain 2) To assess participants’ views on the quality of information provision by fertility clinics on long-term ART outcomes regarding maternal health, child health and child education (Domain 3) To understand participants’ perceptions of the usefulness and dissemination of national database studies investigating ART-related child health and educational outcomes (Domain 4) To describe participants’ demographic characteristics and experiences with fertility treatment (Domain 1) To explore participants’ concerns, if any, about the long-term ART outcomes regarding maternal health, child health and child education (Domain 2) To assess participants’ views on the quality of information provision by fertility clinics on long-term ART outcomes regarding maternal health, child health and child education (Domain 3) To understand participants’ perceptions of the usefulness and dissemination of national database studies investigating ART-related child health and educational outcomes (Domain 4)