STUDY QUESTION:How can educational resources be feasibly co-designed and used to support conversations between staff and patients about ending fertility treatment? SUMMARY ANSWER:Co-design workshops allow for the development of educational resources that account for all stakeholders' perspectives and are considered sensitive, informative, and helpful to support end-of-treatment conversations, but staff and patients have different views about how these can be used within the treatment pathway. WHAT IS KNOWN ALREADY:Ending treatment without children is a common outcome but seldom discussed with patients. Preventive end-of-treatment care aims to promote healthy transitions at the end of treatment by preparing and helping patients cope with this possible outcome. Nine in ten patients want to receive such care, but only 3 in 10 report receiving it. Knowledge of perceived barriers to implementing preventive end-of-treatment care at clinics and whether digital educational resources can be developed to support its provision is lacking. STUDY DESIGN, SIZE, DURATION:Co-design workshops with fertility staff (March 2022), patients, and patient advocates (March-December 2022) from Europe (Belgium, Finland, Germany, Italy, Portugal, Spain, and UK) and South America (Argentina, Brazil, and Chile). Staff were invited to participate through fertility professional and scientific associations, and patients and advocates via charities and social media. Eligibility criteria were being aged 18 or older and working in fertility care (for staff) or charity (for advocates) or being waiting to initiate, undergoing, or having undergone treatment within 6 months (for patients). PARTICIPANTS/MATERIALS, SETTING, METHODS:A preliminary specification and initial prototypes of digital educational resources to support staff and patients, respectively, in having conversations about ending treatment were developed with relevant stakeholders. Co-design workshops with study participants were conducted. A semi-structured script, following Bowen et al.'s (2009)feasibility framework, was used to guide the workshops. Questions covered: (i) experiences, views, and preferences on the provision of preventive end-of-treatment care at clinics and iterative prototypes of the resources to support this provision (acceptability); (ii) perceived need and benefits (demand); and (iii) perceived barriers and facilitators to its implementation at clinics (practicalities). Workshops were recorded and transcribed verbatim, and data were analysed using Framework Analysis. MAIN RESULTS AND THE ROLE OF CHANCE:Fifteen fertility staff, 34 patients, and 7 advocates participated. Staff were mainly psychologists/counsellors (40.0%) or clinicians (26.7%) working in the field for around 23 years. Patients were mostly women (91.2%), on average aged 38 years. Most were childless (73.5%) and trying to conceive for around 3 years. Framework analysis of data collected during the co-design workshops generated four themes and one meta-theme, reflecting a need for a normative shift across countries towards the routine implementation of preventive end-of-treatment care. Themes reflected: (i) demand for routine provision of holistic psychosocial care, including preventive end-of-treatment care; (ii) different views between staff and patients about the risks and extent of benefits of routinely implementing preventive end-of-treatment care; (iii) patient high clarity about the functions of preventive end-of-treatment care (ensuring patients feel prepared and supported in moving through the grief and cope with short-term challenges; explore other pathways to parenthood and re-orient one's life goals; and ensure informed consent for fertility treatment) versus staff lower clarity, with care being equated to signposting patients for timely psychological support; and (iv) co-designed digital educational resources are helpful to support the routine provision of preventive end-of-treatment care at clinics. LIMITATIONS, REASONS FOR CAUTION:Non-probability sample. Although the patient sample was heterogeneous (heterosexual and same-sex couples; private and public sectors), patients were primarily White, well-educated, employed, and childless women, limiting the generalization and comparisons across gender and other personal characteristics (ethnicity, socioeconomically disadvantaged, and disabled), where access to and acceptance of psychosocial support are expected to be lower. WIDER IMPLICATIONS OF THE FINDINGS:Routine discussions about the end of treatment are needed and beneficial, but staff will require reassurance and training on with whom, when, and how to engage in these. The final version of the digital educational resources is seen as valuable to support a cultural shift in implementing end-of-treatment preventive care at clinics. The co-designed webpages are freely available online in four languages (for staff: www.myjourney.pt/clinics, for patients: www.myjourney.pt/patients). Future research is needed to raise awareness and further investigate how best to support staff in such care provision and measure its impact. STUDY FUNDING/COMPETING INTEREST(S):This work was supported by a Research Wales Innovation Fund from the Higher Education Funding Council for Wales (HEFCW, grant No.: JA1710IF63). M.S.-L. was supported by the Portuguese Foundation for Science and Technology (FCT; fellowship No.: SFRH/BD/144429/2019) and the UK Economic and Social Research Council (ESRC; fellowship No.: ES/Z503125/1). The EPIUnit and ITR were funded by the FTC through the Portuguese State Budget (projects No.: UIDB/04750/2020 and LA/P/0064/2020 and DOI identifiers https://doi.org/10.54499/UIDB/04750/2020 and https://doi.org/10.54499/LA/P/0064/2020). S.G. reports grants from the European Society for Human Reproduction and Embryology (ESHRE), the Wellcome Fund (UK), and the Health and Care Research Wales (UK). Cardiff University holds the Intellectual Property rights for the tool www.myjourney.pt, licensed under a Creative Commons AttributionNonCommercial-ShareAlike 4.0 International Licence (CC BY-NCSA 4.0). TRIAL REGISTRATION NUMBER:n/a.
STUDY QUESTION:What are experiences of infertility-related traumatic events and are these associated with symptoms of Post-Traumatic Stress Disorder (PTSD) and Complex PTSD (CPTSD)? SUMMARY ANSWER:Infertility-related trauma results from the interplay between a strong unfulfilled desire for children, negative reproductive events and (lack of) associated care, with 9% and 32% of those reporting a traumatic event meeting criteria for PTSD and CPTSD, respectively. WHAT IS KNOWN ALREADY:There is worldwide recognition that fertility treatment is highly stressful, but limited understanding of its potential to trigger traumatic responses like PTSD and CPTSD. PTSD is a mental health disorder characterized by reexperiencing the traumatic event, avoidance of traumatic reminders, and a sense of ongoing threat. CPTSD is diagnosed when trauma also leads to difficulty managing emotions, negative self-concept, and disturbances in relationships. We aimed to document infertility-related traumatic events and how these are associated with symptoms of PTSD and CPTSD. STUDY DESIGN, SIZE, DURATION:Mixed-methods online survey co-produced with and disseminated by the charity Fertility Network UK. Inclusion criteria were being an adult, having suffered from infertility or attended a fertility clinic within the last 5 years, and the ability to read/write English. Eight hundred and sixty-five consented, and 590 (68%, final sample) reported on their most troubling infertility experience. PARTICIPANTS/MATERIALS, SETTING, METHODS:Most participants were highly educated white heterosexual women in a relationship. The average age was 37.54% had children, 65% were trying to have (more) children, and 30% were undergoing treatment. Infertility-related trauma experiences and symptoms were assessed with the International Trauma Questionnaire (ITQ, Cloitre et al, 2018, 2021), a validated questionnaire that asks people to describe the experience that troubles them the most and to rate how much 18 trauma-related symptoms bothered them in the past month (Likert scale, from 1-none at all to 5-extremely). The ITQ is used to identify participants meeting criteria for PTSD, CPTSD, or both. We replaced 'experience' with 'infertility experience'. Participants also reported on other traumatic experiences, on 12 negative reproductive events (e.g. failed cycle, treatment, [recurrent] miscarriage, stillbirth, and experiences of care). MAIN RESULTS AND THE ROLE OF CHANCE:Descriptions of infertility troubling experiences yielded 31 categories, 7 themes and 3 meta-themes. Themes showed that suffering and distress are omnipresent in fertility care due to the stressful nature of fertility treatment journeys (e.g. emotional burden, invasive procedures), reproductive loss (e.g. cycle failures, miscarriages), and lack of control (e.g. over access to treatment and its outcomes). This repeated accumulation of distress was compounded by care perceived as dismissive (e.g. insensitive and unsupportive care) and medical trauma (e.g. complications, errors) and had a functional impact at the individual and social level. Fifty-three (9%) participants met criteria for PTSD, 189 (32%) for CPTSD, with 242 (41%) meeting criteria for PTSD or CPTSD. Three-hundred and twenty-eight (56%) participants reported other traumatic events, the 3 most frequent referring to achievement (45%, health and parenthood goals, for example, adoption disruption, recurrent miscarriage), survival (27%, e.g. accidents, traumatic birth) and autonomy (17%, e.g. rape, domestic abuse). The most reported negative reproductive events were unsuccessful cycle (79%), miscarriage (57%), and unsuccessful treatment (52%). Ninety (16%) participants reported that staff discussed trauma with them, 154 (28%) that staff put in place support, and 334 (61%) that the care received made their distress worse. Logistic regression (χ2 = 78.600, df = 11, P < .001) explained 21.7% of variance in meeting criteria for CPTSD. Participants who met criteria for CPTSD were less likely to have children (OR = 0.461 [0.280, 0.759]), more likely to report a strong child desire (OR = 1.202 [1.036, 1.395]), to have experienced their troublesome infertility experience within the last year (ref category within last year, 1 to 5 years OR = 0.557[0.339, 0.917]), having ended treatment without children (OR = 1.630 [1.051, 2.529], having experienced recurrent miscarriage (OR = 2.2028 [1.109, 3.709]), and reporting that care received made trauma worse (OR = 1.788 [1.124, 2.845]). Background factors (e.g. ethnicity, sexual orientation) were not associated with CPTSD and none of the factors measured were associated with PTSD. LIMITATIONS, REASONS FOR CAUTION:The survey may have attracted people self-identifying as having experienced traumatic events, but the sample is overall representative of the typical fertility care population and at risk-groups (e.g. ethnicity, sexual orientation, asylum seekers) were unrepresented. Participants meeting criteria for PTSD and CPTSD diagnoses were identified using a self-reporting questionnaire, but which is validated, sound and internationally used. WIDER IMPLICATIONS OF THE FINDINGS:Many fertility patients have experienced or will experience traumatic events prior to and/or during treatment, and trauma responses can be compounded by poor care and psychosocial contexts. Traumatic events and symptoms must be recognised in clinical practice to prevent (re)traumatising patients, as many will return for treatment and risk re-exposure. STUDY FUNDING/COMPETING INTEREST(S):None. TRIAL REGISTRATION NUMBER:Not applicable.
Infertility is a major public health issue with a 17.5
A recent UKRI call for training programmes to improve research culture at Higher Education Institutions led Cardiff University to design Cynnau|Ignite. This active learning programme intends to foster positive research culture practices through empowering staff towards leadership on this agenda, and by embedding learners in environments where these practices are highly valued. Cynnau|Ignite will be implemented within Cardiff University as three tailored programmes, dependant on job roles: Teaching and Research (64 learners), Research-Only (32 learners), and Professional Services, Technicians and Specialists (32 learners). This protocol details a theory-based, mixed methods evaluation of Cynnau|Ignite’s effectiveness, acceptability, and feasibility as a tool to improve research culture practices and perceptions within Cardiff University. This knowledge will help inform future iterations of Cynnau|Ignite and similar initiatives, while advancing methods for the evaluation of positive research culture practices, and has potential to inform choices regarding funding and evaluation of research culture initiatives at other Higher Education Institutions. Here, we outline the Cynnau|Ignite Theory of Change used to inform our primary outcomes and describe our plan to evaluate the programme’s effectiveness by measuring learners’ self-reported positive research culture practices (intentions and behaviours) before and after taking part in Cynnau|Ignite, in comparison to a control group of staff who were not involved in the programme. Additionally, data monitoring, sessions observation, and semi-structured interviews will be conducted to establish programme acceptability and feasibility for stakeholders including learners, the delivery team, and university management. We hypothesise Cynnau|Ignite will be largely acceptable and effective in boosting learners’ positive research culture intentions compared to a control group, but believe behavioural implementation may be adversely affected by common barriers such as insufficient time and resources. Overall, we expect Cynnau|Ignite to improve short-term positive research culture practices and perceptions at Cardiff University, but its potential long-term impact is unclear. Study registration Number: ISRCTN15575518
STUDY QUESTION:Which research topics in the area of infertility should be prioritized in the allocation of research resources? SUMMARY ANSWER:Twelve research priorities were formulated, spanning the following areas: preventing infertility and preserving fertility, gynaecological diseases, male infertility, optimizing fertility treatments, optimizing psychosocial support and deepening knowledge on preimplantation development and early pregnancy. WHAT IS KNOWN ALREADY:Many research gaps related to infertility and its management remain understudied and underfunded, making it important to set priorities to ensure appropriate allocation of research resources. STUDY DESIGN, SIZE, DURATION:The European Society of Human Reproduction and Embryology (ESHRE) appointed a multidisciplinary working group, including a patient representative, to develop a list of research priorities related to infertility, which are relevant to researchers and institutions that fund research. PARTICIPANTS/MATERIALS, SETTING, METHODS:A list of research topics was collated based on the recommendations for future research formulated in ESHRE's evidence-based guidelines and suggestions submitted by ESHRE's Special Interest Groups as call topics for the ESHRE research grants. A scoring tool was developed to assess the expected impact of research on each topic on individuals, society and scientific advancement. Topics were scored independently by the working group members and the 12 topics with the highest scores were selected for presentation in this paper. MAIN RESULTS AND THE ROLE OF CHANCE:Using our newly developed scoring tool, we have identified 12 research priorities that broadly fall under six areas. These are preventing infertility and preserving fertility, gynaecological diseases, male infertility, optimizing fertility treatments (two priorities per area selected), optimizing psychosocial support (one priority selected) and deepening knowledge on preimplantation development and early pregnancy (three priorities selected). LIMITATIONS, REASONS FOR CAUTION:The impact scoring tool would benefit from further testing and refinement in future projects. The scoring of some impact indicators is heavily based on the judgment and expertise of the scorers, which was accounted for by ensuring representation of knowledge and experience from all relevant disciplines and subject areas as well as the patient perspective within the working group. WIDER IMPLICATIONS OF THE FINDINGS:This paper may serve to stimulate further thought and discussion within the infertility research community on the potential impact of proposed and ongoing research. It will furthermore inform and encourage policy makers involved in research funding allocation and contribute to a more efficient and purposeful allocation of research resources towards infertility research. STUDY FUNDING/COMPETING INTEREST(S):The technical support for this project was provided by ESHRE. A.C. reports employment at Juno Genetics. Y.C. reports a grant from Guerbet and honoraria from Ferring, Merck, Abbot, Nordic Pharma and Organon. G.C. reports consulting fees from Gedeon Richter and honoraria from Cooper Surgical. S.G. reports the development of www.myjourney.pt licensed under a CC BY-NC-SA 4.0 licence. J.K.-B. reports grants from the NIHR Evaluation and Studies Coordinating Centre, the Gates Foundation, the Economic and Social Research Council, BAYER Consumer Health and MRC Confidence in Concept; honoraria from Ferring and Cooper Surgical; travel support from Ferring, Cooper Surgical, Congressworks LLP, Deutsche Gesellschaft für Andrologie e. V., BAYER, University of Munster and ESHRE; a patent for microchannel sperm cell preparation; and a leadership or fiduciary role in the Association of Clinical and Reproductive Scientists. A.P. reports grants (to her institution) and consulting fees from Gedeon Richter, Ferring, Merck A/S and Cryos; honoraria from Gedeon Richter, Ferring, Merck A/S and Organon; and travel support (to her institution) from Gedeon Richter. H.S.N. reports grants from Freya Biosciences ApS, Ferring Pharmaceuticals, BioInnovation Institute, Ministry of Education, Novo Nordic Foundation, Augustinus Fonden, Oda og Hans Svenningsens Fond, Demant Fonden, Ole Kirks Fond and the Independent Research Fund Denmark; speaker's fees from Ferring, Merck A/S, Astra Zeneca, Cook Medical, Gedeon Richter, Ibsa Nordic, Novo Nordisk A/S; co-development of an app with the Maternity Foundation; and co-founding a project with Lulu Health. The remaining authors (J.T., A.A., I.D., C.F., M.G., A.S.L., M.M.-R., V.N., A.O., N.R., M.S.-L., P.T., N.V., S.V. and K.S.) have nothing to declare. TRIAL REGISTRATION NUMBER:N/A.
INTRODUCTION:Sharing bad news (SBN) is a recurring and stressful challenge for fertility staff and patients. Suboptimal SBN is associated with staff burnout, patient dissatisfaction with care and lack of trust in staff, potentially leading to patient discontinuation. Patients value staff having SBN skills, but staff feel unprepared to do this task. fertiShare is a 2-hour bespoke eLearning course to support fertility staff in SBN with their patients, organised into three modules, with each module offering video content-based lessons, simulated case studies showing optimal and suboptimal approaches to SBN and brief quizzes for self-reflection and assessment. This protocol aims to evaluate if it is feasible to implement fertiShare at UK-based fertility clinics and if it is acceptable to staff and patients. METHODS AND ANALYSIS:Multicentre, two-arm, parallel-group, blinded, feasibility randomised controlled trial with 1:1 randomised staff allocation to fertiShare (intervention group) or general communication skills eLearning (control group). Six UK-based clinics, 60 staff spending a minimum of 10% week-time SBN and 360 patients having received bad news from participating staff within the last month will be recruited. Two cohorts of patients will be recruited, one after staff consent to the study and before fertiShare or control eLearning course (pretraining patient cohort) and another 1-month post staff training (post-training patient cohort). Outcome measures relate to demand, acceptability, implementation, practicality and limited efficacy testing, with the primary outcome being staff performance when SBN, reported by patients using an adapted version of the SBN Behavioural Assessment Scale. Recruitment and data collection will span from September 2025 to February 2026. ETHICS AND DISSEMINATION:The study was approved by the National Health Service Research Ethics Committee (23/LO/0864) and the Cardiff University - School of Psychology Research Ethics Committee (EC.23.08.08.6827). Results will be disseminated via publications in peer-reviewed journals, conference presentations and public engagement, and will inform if fertiShare should proceed to efficacy evaluation. Insights from this study can inform the implementation of other SBN training in fertility or other healthcare domains and improve understanding of the impact SBN training has on patient experience and outcomes. TRIAL REGISTRATION NUMBER:NCT06587360, https://www. CLINICALTRIALS:gov/.
What are staff and patients’ views of the impact of staff doing fertiShare on patient, staff, and clinic outcomes? Staff think fertiShare improves SBN performance, but patients report variable experiences, with better performance being associated with ability to make informed decisions about future care. Sharing bad news (SBN) is a challenging task for fertility staff but little guidance exists to support them. fertiShare is a 2-hour bespoke eLearning course to support staff in SBN with patients. Meta-analytic evidence shows that SBN training that imparts knowledge and models good practice improves staff performance, but how training impacts on patients’ experience of SBN encounters and valued outcomes for patients, staff and clinics is still unknown. This study investigated patients’ and staff views of the impact of fertiShare on their experiences of receiving and sharing news and associated outcomes, and how these are shaped by context. Multi-informant qualitative realist evaluation to test fertiShare’s Programme Theory, composed of 27 hypotheses about how fertiShare’s active components (Mechanisms) interact with Context to trigger (or not) desired (or other) staff, patient and clinic Outcomes (CMO chains). Eligible staff were those working at UK and European-clinics and spending 10%-week time sharing bad news (SBN). Eligible patients had received news from participating staff. 12 staff and 12 patients were purposively recruited from European (staff only) and UK-clinics. CMOs were presented to a stakeholder group for feedback and revised accordingly. Consenting staff were invited to do fertiShare and apply it in practice. Staff and patients were independently interviewed using semi-structured interview topic-guides designed to elicit views and experiences of the hypothesized CMOs. Interviews were transcribed verbatim and data coded deductively (against CMO chains) and inductively (emerging themes) to reach conclusions about if, how, and why fertiShare creates impacts for staff, patients and clinics. Based on stakeholders’ feedback, 2 CMOs were changed and 3 added. Interview data addressed 28 of the 30 revised CMOs, with 15 (50%) reaching data saturation. Seven patients reported staff shared news optimally, 3 sub-optimally, 1 could not remember. Patients reported (staff applying) fertiShare-recommended practices helped them understand their situation, make informed decisions about future care, and feel respected, supported and reassured [Mechanisms], resulting in satisfaction with care and trust in the clinic [Outcomes]. Perceptions of SBN encounters were shaped by the broader care Context, via comparing and contrasting with other SBN (and other) interactions with staff, and general views of what is good communication. Patients viewed optimal SBN as an important but insufficient factor for continuing treatment at the clinic [Outcome], with other (clinical, financial, motivational) factors influencing this decision. Staff evaluated fertiShare’s activities (video-lectures, case-studies, quizzes) positively and thought these triggered better SBN performance [Outcome] via reflection on how to improve behaviours, greater consideration of patients’ perspective (e.g., when providing information), emotional resonance, and team support [Mechanims]. Engagement with fertiShare is shaped by staff’s learning preferences and clinic’s organisational (e.g., time, staffing) and cultural context. Ability to apply recommendations is hindered by poor organisation and low resources [Context]. Staff worked at different clinics across Europe but patients had treatment in same clinic and responses may be shaped by their specific care context. Low staff and patient pairing and percentage of CMOs with data saturation hindered ability to reach conclusions about some causal chains linking fertiShare implementation to outcomes. fertiShare can catalyse good SBN practice at fertility clinics but needs to be implemented as a team effort so that good practices permeate all patient-staff interactions. Optimal SBN promotes trust in clinic and informed decision-making about future care but will not necessarily lead to uptake of more treatment. No
IntroductionFertility patients increasingly use web-based and mobile-based apps to access psychosocial care. These digital tools may be a helpful alternative to traditional psychological interventions. Developing and evaluating patient-centred e-mental health tools rooted in evidence-based interventions is a priority. The KindMap is a stand-alone, cost-free e-mental health intervention derived from adapting the Mindfulness Based Programme for Infertility (MBPI) contents to a digital format. The KindMap integrates mindfulness and self-compassion skills training and Acceptance and Commitment Therapy components. This protocol is intended to evaluate the KindMap’s feasibility and explore the extent to which the web-app mode of delivery limited efficacy results are similar to the MBPI in-person format results. Furthermore, it will test the causal theory underlying KindMap.Methods and analysisA two-arm 2:1 non-blinded feasibility randomised controlled trial (RCT) will be conducted. Participants are people dealing with infertility, who are able to access the Internet and understand Portuguese or English. Consent participants will complete an online survey at 3-time assessment moments. After baseline assessment, participants will be randomised into the KindMap experimental group (KindMap-EG; with immediate access to the web app) or the waiting-list control group. The primary outcome is well-being (WHO Index-5); secondary outcomes are infertility-related stress (Fertility Problem Inventory—Short Form), anxiety and depression (Patient Health Questionnaire for Depression and Anxiety-4); mindfulness (Five Facet Mindfulness Questionnaire—Short Form), self-compassion (Self-Compassion Scale—Short Form), psychological flexibility (Psy-Flex) and infertility-related self-efficacy are the potential mechanisms of change. KindMap-EG will also complete a feasibility survey.Ethics and disseminationThe study was approved by the Ethics Committee of the Faculty of Psychology and Educational Sciences of the University of Coimbra (Identifier: CEDI/FPCEUC:78/R_10). The KindMap study may contribute to the existing research on e-health technologies applied to mental health. The study outcomes will be disseminated through publications in peer-reviewed journals and national and international conference presentations.Trial registration numberNCT05899374.
Abstract This chapter reviews theory and evidence that provide insight into how families using medically assisted reproduction (MAR) to have children, for instance, in vitro fertilization (IVF), cope with and adjust to the challenges these technologies pose. First, fertility problems and/or the use of technologies to have children can affect the way parents experience pregnancy and relate to their children. Second, the lack of a genetic link resulting from the use of donated gametes can affect parenting and parent–child relationships. Third, MAR has allowed for the proliferation of modern forms of families, and the implications of this are still being investigated. Fourth, issues of secrecy around MAR can impact family communication and child development. Finally, around one-third of those who use MAR do not manage to have children, and these families will have to adjust to this loss.
STUDY QUESTION: What is the prevalence of occupational stress, somatization, and burnout reported by UK and US, embryologists and the impact of work conditions on these well-being outcomes? SUMMARY ANSWER: Surveyed UK and US embryologists reported moderate perceived stress, low somatic symptom severity, high levels of burnout, and overall stressful work conditions, but with differences that could be due to country-specific occupational and employment characteristics. WHAT IS KNOWN ALREADY?: Spanish, UK, US, and international surveys have identified high levels of occupational stress, somatization, burnout, and occupational health issues among embryologists. These issues have been attributed to embryologists' occupational challenges and work conditions. STUDY DESIGN, SIZE, DURATION: A cross-sectional web-based survey was sent to 253 embryologists working in UK ART/IVF clinics and 487 embryologists working in US ART/IVF clinics. PARTICIPANTS/MATERIALS, SETTING, METHODS: Participants self-reported their stress levels, somatization, burnout, and work conditions. Proportions across the Perceived Stress Scale (PSS), Patient Health Questionnaire (PHQ-15), Maslach Burnout Inventory-General Survey (MBI-GS), a single-item work unit grade (A-F), and customized occupational and sociodemographic questionnaires were calculated using descriptive statistics. Welch's t-test was utilized to compare PSS and PHQ-15 scores between groups. Risk ratios were calculated using log-binomial regression for all models except for levels of anxiety related to performing cryostorage tasks, for which Poisson models were used. MAIN RESULTS AND THE ROLE OF CHANCE: In total, 50.6% (128) of the embryologists in the UK and 50.1% (244) in the US completed the survey. Both groups self-reported moderate PSS and low PHQ-15 scores, although fewer UK embryologists scored high on the MBI cynicism dimension than their US colleagues (43% UK vs 60% US embryologists, P < 0.05). The UK and US embryologists did not differ on the MBI exhaustion dimension with both scoring high for exhaustion (59% UK vs 62% US). Although 81% and 80% of UK and US embryologists, respectively, reported working overtime, more embryologists in the UK reported being adequately compensated. Increasing levels of anxiety-related to cryostorage showed a dose-dependent increased risk of burnout on at least two MBI-GS dimensions only in the UK group, and, a dose-dependent likelihood of higher PSS and PHQ-15 scores in both groups. LIMITATIONS, REASONS FOR CAUTION: Since the two groups were surveyed 9 months apart and were self-reporting, the study is limited by the differences in responsibilities, scheduling, and workload specific to the time of year. WIDER IMPLICATIONS OF THE FINDINGS: Work-related health issues and occupational challenges shared by UK and US embryologists could be addressed by organizational enhancements and technology. Lower levels of stress and burnout among UK embryologists might be due to the HFEA-provided structure/certainty. STUDY FUNDING/COMPETING INTEREST(S): This study was supported without any external funding by TMRW Life Sciences Inc., which is developing and commercializing an automated platform for embryology. M.G.C. and M.S.L. are full-time employees and stockholders/shareholders with TMRW Life Sciences, and A.M. of Novavax, Inc. was an employee of TMRW Life Sciences. G.P. is a consultant for TMRW Life Sciences. The remaining authors declare no conflict of interest. TRIAL REGISTRATION NUMBER: NCT05326802; NCT05708963.
Abstract STUDY QUESTION What are fertility staff experiences of managing COVID-19-related uncertainty after fertility clinics re-opened? SUMMARY ANSWER Staff identified many COVID-19-related uncertainty sources, the main being the COVID-19 health threat, to which most clinics and staff responded effectively by implementing safety protocols and building strong collaborative environments that facilitated the acquisition and application of information to guide organizational responses during a rapidly changing situation, but with costs for staff and patients. WHAT IS KNOWN ALREADY COVID-19 created significant disruption in fertility care delivery, including temporary clinic closure and treatment delay. Patients experienced significant distress, including concerns regarding the impact of COVID-19 and its vaccine on fertility and pregnancy. Multiple studies show that COVID-19-related uncertainty is a major threat and burden for healthcare staff, but this has not been investigated in reproductive medicine. STUDY DESIGN, SIZE, DURATION A cross-sectional, online mixed-method bilingual (English, Spanish) survey (active 25 January–23 May 2021) was distributed to fertility staff across the UK, Latin America, and Africa. PARTICIPANTS/MATERIALS, SETTING, METHODS Eligibility criteria were being a healthcare worker at a fertility clinic that had re-opened since its COVID-19-related closure, 18 years of age or older and ability to respond in English or Spanish. The survey was created in English, translated to Spanish, made available using Qualtrics, and consisted of four parts: (i) background and physical and mental wellbeing, (ii) open-ended questions regarding COVID-19 uncertainty, (iii) appraisal items regarding perceptions and impact of uncertainty, and (iv) changes in the workplace. The British Fertility Society and the African Network and Registry of Assisted Reproduction circulated the survey across the UK and Africa via email hyperlinks and social media platforms. The Argentinian Society of Reproductive Medicine and the Latin American Network of Assisted Reproduction distributed the survey across Latin America in the same manner. Thematic analysis was performed on responses from open-ended question to produce basic codes. Deductive coding grouped sub-themes across questions into themes related to the theory of uncertainty management. Descriptive statistics and repeated measures analysis of variance were used on the quantitative data. MAIN RESULTS AND THE ROLE OF CHANCE In total, 382 staff consented to the survey, 107 did not complete (28% attrition), and 275 completed. Sixty-three percent were women, 69% were physicians, and 79% worked at private clinics. Thematic analysis produced 727 codes, organized in 92 sub-themes, and abstracted into 18 themes and one meta-theme reflecting that uncertainty is stressful but manageable. The types of uncertainties related to the threat of COVID-19 (20.6%), unpredictability of the future (19.5%), failure of communication (11.4%), and change in the workplace (8.4%). Staff appraisals of negative and positive impact of uncertainty were significantly lower (P < 0.001) than appraisals of stress, controllability, and having what it takes to cope with uncertainty. To process uncertainty, clinics focused on information dissemination (30.8%) and building a collaborative work environment (5.8%), while staff employed proactive coping (41.8%) and emotional and cognitive processing (9.6%). Main organizational responses consisted on work restructuring (41.3%, e.g. safety protocols), adapting to adversity (9.5%, e.g. supplies, preparation), and welfare support (13.8%), though staff perceived lack of support (17.5%). Negative consequences of uncertainty were worse self- and patient welfare (12.1%) and worse communication due to virtual medicine and use of mask (9.6%). Positive consequences were work improvements (8.3%), organizational adaptation (8.3%), improved relationships (5.6%), and individual adaptation (3.2%). Ninety-two percent of participants thought changes experienced in the workplace due to COVID-19 were negative, 9.1% nor negative nor positive, and 14.9% positive. Most staff thought that their physical (92.4%) and mental health (89.5%) were good to excellent. LIMITATIONS, REASONS FOR CAUTION Participants were self-selected, and most were physicians and embryologists working at private clinics based in Latin America. The study did not account for how variability in national and regional COVID-19 policy shaped staff experiences of uncertainty. WIDER IMPLICATIONS OF THE FINDINGS To address COVID-19 uncertainty, clinics need to promote collaborative (clinic, staff, patients) processing of uncertainty, clear team coordination and communication, organizational flexibility, and provision of support to staff and patients, with an emphasis on cognitive coping to decrease threat of and increase tolerance to uncertainty. Uncertainty management interventions bespoke to fertility care that integrate these components may increase clinics resilience to COVID-19-related and other types of uncertainty. STUDY FUNDING/COMPETING INTERESTS Cardiff University funded this research. S.G. reports consultancy fees from Ferring Pharmaceuticals A/S, speaker fees from Access Fertility, SONA-Pharm LLC, Meridiano Congress International, and Gedeon Richter, and grants from Merck Serono Ltd. F.Z.-H. reports speaker fees from Ferring Pharmaceuticals A/S and that he is a chair of the Latin American Registry of ART, Committee of Ethic and Public Policies, and Chilean Society of Obstetrics and Gynecology and a vice chair of the International Committee for monitoring ART. K.A., N.C., G.B., and J.B. report no conflict in relation to this work. TRIAL REGISTRATION NUMBER N/A.
An increasing number of prospective parents are experiencing infertility along with associated negative impacts on mental health and life satisfaction that can extend across a network of individuals and family members. Assistive reproductive technologies (ART) can help prospective parents achieve their parenthood goals but, like any health technology, they must demonstrate acceptable 'value for money' to qualify for public funding. We argue that current approaches to understanding the value of ART, including quality-adjusted life-year (QALY) gains based on changes in health-related quality of life (HRQOL) and, more often, cost per live birth, are too narrow to capture the full impact of unmet parenthood goals and ART. We see a fundamental disconnect between measures of HRQOL and broader measures of wellbeing associated with met and unmet parenthood goals. We also suggest that simple concepts such as 'patient' and 'carer' are of limited applicability in the context of ART, where 'spillovers' extend across a wide network of individuals, and the person receiving treatment is often not the infertile individual. Consideration of individual and societal wellbeing beyond HRQOL is necessary to understand the full range of negative impacts associated with unmet parenthood goals and the corresponding positive impacts of successful ART. We suggest moving towards a wellbeing perspective on value to achieve a fuller understanding of value and promote cross-sector allocative efficiency.
To compare for the first time (1) the prevalence of stress, fatigue, and burnout among U.S. and U.K. embryologists; and (2) the current workflow and organizational characteristics of the embryology laboratory locally and how they affect embryologists' physical and psychological health in the two independently conducted and previously reported surveys. A cross-sectional web-based survey was sent to 487 embryologists working in U.S.-licensed ART/IVF public and private clinics in April 2022 and 253 embryologists working in Human Fertilization and Embryology Authority (HFEA)–licensed U.K. ART/IVF public and private clinics in January 2023. Respondents self-reported their burnout and stress levels, physical health status, and work conditions they perceived as occupational using the Maslach Burnout Inventory-General Survey (MBI-GS), Perceived Stress Scale (PSS), Patient Health Questionnaire (PHQ-15), a single-item work unit grade (A–F), and a customized occupational questionnaire. Weighted percentages for the reported physical and mental health components were calculated using univariate statistics; their means between the two groups were compared using Welch's t-test and one-way ANOVA. In total, 50.2% of the U.K. embryologists (mean age 34.4 years; 87% women; 83% with a graduate degree) and 50.5% of the U.S. embryologists (mean age 40.1 years; 65% women; 57% with a graduate degree) completed the survey; 93% of the U.K. v. 76% of the U.S. embryologists had a permanent contract, and 93% v. 80% of them, respectively, worked in the laboratories with ≥5 persons. Of those, 59% of the U.K. and 62% of the U.S. embryologists reported high burnout on the exhaustion dimension (P < 0.05). However, only 43% of the U.K. embryologists scored high on the cynicism dimension v. 68% of their U.S. colleagues (P < 0.05). The PSS showed moderate perceived stress (P > 0.05), and the PHQ-15 showed low somatic symptom severity (P > 0.05) in both groups. Regarding organizational characteristics, although 81% and 80% of U.K. and U.S. embryologists, respectively, reported working overtime, more U.K. embryologists reported being adequately compensated for working overtime/holidays/weekends and better scheduling flexibility than their U.S. colleagues. Although only 58% U.K. embryologists found themselves doing double work due to a lack of technology integrations and analog records v. 72% of their U.S. colleagues, half of the respondents in both groups reported cryostorage-related anxiety. Both U.K. and U.S. embryologists reported low somatic symptom severity, moderate perceived stress, high levels of burnout, and stressful working conditions that negatively affect their well-being and may adversely affect the quality of their work but with differences in their organizational and employment characteristics.
Abstract Introduction Many people undergo fertility treatment to have biological children, but around four in ten patients complete all treatment cycles without having the children they desire. This triggers intense grief from which patients report taking on average 2 years to recover. Fertility guidelines and regulators stress the need to support patients through this process, but there is a scarcity of evaluated interventions to this end and evidence about when and how to offer care is lacking. This study explored patients' and healthcare professionals' (HCPs) experiences of and views about provision of psychosocial care (to patients facing unsuccessful fertility treatment, i.e., care provided by a mental health professional to address the emotional, cognitive, behavioural, relational and social needs that patients have at this stage of treatment). Methods Five qualitative online focus groups were conducted with Portuguese participants: three with patients waiting to initiate or undergoing their last cycle of in vitro fertilization/intracytoplasmic sperm injection or having completed it within the last 2 months without achieving a pregnancy and two with HCPs working at fertility clinics. Focus groups were recorded and transcribed verbatim, and data were analysed with Framework Analysis. Results Thirteen patients and nine HCPs participated. Analysis resulted in 1293 codes, systematically organized into 13 categories, 4 themes and 1 metatheme. The latter showed high consensus about the need for psychosocial care for unsuccessful treatment, but perceived challenges in its implementation. Themes reflected (1) consensual demand for psychosocial care at all stages of treatment but particularly at the end, (2) high perceived acceptability of integrating preventive care initiated during treatment with early psychosocial care only for those patients who experience unsuccessful treatment, (3) perceived challenges of implementing psychosocial care for unsuccessful treatment at clinics and (4) suggestions to promote its acceptability and feasibility. Conclusion Patients and HCPs perceive that clinics should improve care provision across the whole treatment pathway and in particular for unsuccessful fertility treatment. Suggestions were made to inform future research focusing on the development and evaluation of psychosocial interventions to this end. Patient or Public Contribution Patients and HCPs participated in the focus groups. Two HCPs also revised the manuscript.
This chapter provides a comprehensive description of the psychosocial effects of undergoing assisted reproductive technology (ART). Psychosocial effects are organized according to domain of impact (behavioral, relations and social, emotional and cognitive) and patients' treatment stage (pre, during, and post-treatment, with the latter including unsuccessful treatment and pregnancy and early postpartum). Before starting treatment, patients feel empowered and are optimistic about their chances of success. As patients undergo repeated cycles, they experience high emotional reactivity that is related to the challenges treatment procedures pose and their changing perceptions of its possible outcome. Each failed cycle triggers intense depressive symptoms and depletes patients' motivational resources. Patients have to proactively work towards rebuilding their hopes of success and personal resources to cope with treatment to be able to continue. Overall, these coping efforts seem to bring partners (when there is one) together. The pregnancy and early postpartum period of patients who achieve parenthood with ART are similar to those of people who become parents without treatment. When ART is unsuccessful, patients experience a profound loss that affects all life domains and requires a profound shift in core beliefs and life expectations to rebuild a sense of purpose and satisfaction with life.
This article argues that arts-based methods such as drawing are particularly useful as means to explore experiential insights into how violent conflict impacts individuals and communities in specific sociocultural contexts and shapes their views of development and peace. It illustrates this through the discussion of a drawing workshop with members of violence-affected communities in Kachin state, Myanmar. Reflecting on the workshop findings and dynamics and on the positive impacts the methods’ adoption had on practices of an international civilian protection NGO in Myanmar, the article concludes that, when implemented with care, arts-based methods do not only help accessing deep context-specific insights to complement outsider-expert analyses, by creating a safe space to share experiences, but they also enable new engagements among local actors and with outside organisations, which can strengthen the primacy of local actors in peacebuilding and development initiatives.
It is well known that in vitro fertilization (IVF)/intracytoplasmic sperm injection (ICSI) per cycle live birth rates are low (25%–30%) but that patients can increase their chances of achieving parenthood by undergoing repeated cycles. Women aged <40 years with good prognosis, in particular, have a 62.6% chance of achieving pregnancy with three cycles of treatment, and this increases to 80.3% if they undergo six cycles (1Smith A.D.A.C. Tilling K. Nelson S.M. Lawlor D.A. Live-birth rate associated with repeat in vitro fertilization treatment cycles.JAMA. 2015; 314: 2654-2662Crossref PubMed Scopus (91) Google Scholar). Researchers have strived to understand to which degree IVF/ICSI treatment dropout is a problem and why some patients discontinue, but results have been highly heterogeneous. In 2012, my colleagues from the UK and the Netherlands and I conducted, to our knowledge, the first systematic review and meta-analysis of compliance rates with IVF/ICSI treatment, bringing together data from 10 studies and 14,810 patients (2Gameiro S. Verhaak C.M. Kremer J.A.M. Boivin J. Why we should talk about compliance with assisted reproductive technologies (ART): a systematic review and meta-analysis of ART compliance rates.Hum Reprod Update. 2013; 19: 124-135Crossref PubMed Scopus (51) Google Scholar). Our study showed that approximately four in every five patients who start IVF/ICSI treatment (i.e., 78.2%) either become pregnant or undergo at least three cycles of treatment. Nonetheless, dropout increases as patients repeat cycles, from 21.8% to 28.5% after the first and second cycle, respectively. Miller et al. (3Miller L.M. Wallace G. Birdsall M.A. Hammond E.R. Peek J.C. Dropout rate and cumulative birth outcomes in couples undergoing in vitro fertilization within a funded and actively managed system of care in New Zealand..Fertil Steril. 2021; 116: 114-122Abstract Full Text Full Text PDF Scopus (1) Google Scholar) reported a lower dropout rate after the first cycle, of 10.4%, in a group of 974 young, good prognosis couples who accessed funded fertility treatment in New Zealand and were actively managed through their treatment pathway. The researchers explained that patients were managed by treatment coordinators who kept in touch with them and organized each step of treatment. They also had regular free contact with their fertility team, from whom they received written and in-person information about treatment, and were encouraged to access counseling if in need. Finally, they had a review consultation with their doctor at the end of a failed complete cycle or when the cycle had an unexpected outcome (e.g., cancelled because of low response to ovarian stimulation). The cumulative birth rate for two complete cycles (totality of funded treatment in New Zealand) was 59.3% and higher than optimal estimates reported in the literature (50.6%) (1Smith A.D.A.C. Tilling K. Nelson S.M. Lawlor D.A. Live-birth rate associated with repeat in vitro fertilization treatment cycles.JAMA. 2015; 314: 2654-2662Crossref PubMed Scopus (91) Google Scholar). The authors argue that it pays off to support young, good prognosis patients through funded fertility treatment to prevent dropout and achieve high cumulative live birth rates. To prevent dropout, one has to understand why it happens. In the study by Miller et al. (3Miller L.M. Wallace G. Birdsall M.A. Hammond E.R. Peek J.C. Dropout rate and cumulative birth outcomes in couples undergoing in vitro fertilization within a funded and actively managed system of care in New Zealand..Fertil Steril. 2021; 116: 114-122Abstract Full Text Full Text PDF Scopus (1) Google Scholar), consistently with current understanding, even though only 1 in 10 couples dropped out, the majority (63.8%) did it because of the psychological burden of treatment. Indeed, recent studies show that patients start treatment with strong intentions to achieve their goal of parenthood but these are eroded by the multiple challenges they experience during treatment, in particular the experience of an unsuccessful cycle. Patients tend to finish an IVF/ICSI cycle in a negative motivational state that is paired with depressive symptoms and low hopefulness of future success, and these compromise their ability to reengage with treatment despite sustained desire for parenthood (4Gameiro S, Mesquita da Silva S, Gordon U, Baccino G, Boivin J, editors. In-depth analysis of what influences whether patients commit to achieve parenthood and undergo fertility treatment before and after a treatment cycle. Proceeding of the 36th Annual Meeting of the European Society of Human Reproduction and Embryology; 2020; Virtual: Human Reproduction.Google Scholar). The results reported by Miller et al. (3Miller L.M. Wallace G. Birdsall M.A. Hammond E.R. Peek J.C. Dropout rate and cumulative birth outcomes in couples undergoing in vitro fertilization within a funded and actively managed system of care in New Zealand..Fertil Steril. 2021; 116: 114-122Abstract Full Text Full Text PDF Scopus (1) Google Scholar) seem to indicate that actively managing patients by keeping in contact with them, and in particular after failure, can help to address attrition of initial treatment intentions. Recently, we suggested that preparing patients in advance for the challenges of treatment and what to do if cycle(s) fail could help them normalize this experience and rebuild hope after failure (4Gameiro S, Mesquita da Silva S, Gordon U, Baccino G, Boivin J, editors. In-depth analysis of what influences whether patients commit to achieve parenthood and undergo fertility treatment before and after a treatment cycle. Proceeding of the 36th Annual Meeting of the European Society of Human Reproduction and Embryology; 2020; Virtual: Human Reproduction.Google Scholar). Harrison et al. (5Harrison C. Gameiro S. Boivin J. Patient willingness, preferences and decision-making about planning for three complete cycles of IVF/ICSI treatment.Hum Reprod. 2021; 36: 1339-1352Crossref PubMed Scopus (2) Google Scholar) showed that the majority of patients (56%) value the opportunity to plan in advance to undergo multiple cycles of treatment. While they acknowledge the challenges of doing so (e.g., the ability to afford multiple cycles, the emotional impact of treatment), they feel able to do it and perceive multiple benefits, from better preparing for the full cost and time investment of treatment to increasing their chances of success but equally, if all treatment is unsuccessful, having peace of mind of having tried everything they set themselves up to. Overall, the work performed by Miller et al. (3Miller L.M. Wallace G. Birdsall M.A. Hammond E.R. Peek J.C. Dropout rate and cumulative birth outcomes in couples undergoing in vitro fertilization within a funded and actively managed system of care in New Zealand..Fertil Steril. 2021; 116: 114-122Abstract Full Text Full Text PDF Scopus (1) Google Scholar) further supports the idea that it is beneficial to support young, good prognosis patients who have a strong desire to be biological parents, through multiple cycles of treatment. Such support could entail planning from the start for multiple cycles and providing the necessary information that allows patients to prepare in advance on how to cope with all challenges they may come to face. Furthermore, in the aftermath of a failed cycle, and as suggested by Miller et al. (3Miller L.M. Wallace G. Birdsall M.A. Hammond E.R. Peek J.C. Dropout rate and cumulative birth outcomes in couples undergoing in vitro fertilization within a funded and actively managed system of care in New Zealand..Fertil Steril. 2021; 116: 114-122Abstract Full Text Full Text PDF Scopus (1) Google Scholar), clinics could be proactive in reaching out to their patients, with the goal of supporting them in revisiting their initial treatment plan and expressed values underlying such plan, while also boosting back realistic hope of success. Active management of patients with low prognosis or who do not want to plan for multiple cycles would likely differ from the one specified. Dropout rate and cumulative birth outcomes in couples undergoing in vitro fertilization within a funded and actively managed system of care in New ZealandFertility and SterilityVol. 116Issue 1PreviewTo determine the dropout rate between the first and second in vitro fertilization (IVF) cycles in a controlled population derived from a funded and actively managed system of care in New Zealand, including the reason for dropout and associated cumulative live birth rate. Full-Text PDF
Biological parenthood is a central life-goal for many couples that can become blocked when they experience infertility. Many couples who undergo fertility treatment will face failure and consequently have to decide whether to continue with treatment. The present study used the qualitative methodology of Interpretative Phenomenological Analysis to examine self-regulatory approaches that underlie decision-making about continuing treatment. One-time, one-on-one, semi-structured, in-depth interviews were conducted with 16 individuals (eight heterosexual couples) after they had experienced at least one treatment failure and were considering whether to undergo another treatment. After treatment failure, individuals used several approaches to remain engaged with biological parenthood, including reframing treatment failure as a learning tool and emphasizing the importance of persistence in achieving success. The apparent decision to continue with treatment was considered non-negotiable and largely made by women in the partnership. Once the decision was made to pursue treatment, it was not discussed further. Given individuals' willingness to engage in treatment, patients should be offered additional support to consider wide psychosocial implications of continuing treatment.